Story written 2005

Until Christmas 2004 Caitlin had been a healthy child with no symptoms of any illness. After 3 ear infections after Christmas she seemed to lose her appetite, didn’t drink and didn’t want to play. Shortly after finishing her course of antibiotics that didn’t seem to help, she developed a bag cough. After going back to the doctors they rushed her into hospital with pneumonia. After various tests and a blood transfusion they concluded that Caitlin may have an underlying condition but they were not sure if it was Ceiliac Disease or Cystic Fibrosis. With no CF in the family we felt it was highly unlikely.

One night she had a heart block, her heart rate plummeted through the floor and the doctors did everything to get her heart rate back up. It was very frightening as everyone believed we were going to lose her. Following day, after an ultrasound, Caitlin was immediately transferred as they had discovered a problem with her liver. She was moved to Kings College Hospital, London.

During the following 3 weeks various testes were done including two sweat tests. They carried out a liver biopsy and a bronchoscopy which eventually concluded the diagnosis of Cystic Fibrosis. A total shock for the whole family. She was immediately put on IV antibiotics, various medicines and creon (pancreatic enzymes) which she has to take with all her meals and snacks that contain any fat to help her digest her food.

Luckily her lungs are still in reasonably good condition but she has some liver disease which is consistent with CF – all be it very early.

Caitlin now takes around 8 medicines a day orally, a nebuliser twice a day, and has to have regular IV antibiotics every 3-4 months to keep her well. We have to do physio every day twice a day, this no longer involves back slapping but just energetic exercise, such as trampolining etc. It’s very important to keep her active so that her lungs can remain clear, the more she runs the more she coughs so the more stays off her lungs. It is a constant battle to keep her free from infections.

Later in the year she will have a portacath fitted to make her IV’s a little les traumatic. Caitlin also has a nasal gastric tube, she has an over night feed of high calorie drink to help build her weight up.

It has been hard to accept the diagnosis, knowing that the average life span is only 31 for a CF person, and that ahead lies possibilities of transplants of lungs or liver. Despite that, we try and remain hopeful and positive, enjoy our little girl each and every day and just try our best to keep her well.

She has been remarkable and takes everything in her stride. We are very proud of her. We have a great support network in hospital specialists and home nurses, so between us we will battle to keep her well.

Update 6th March 2013

Hi everyone, we are now moving Caitlin on from Post Pals. We have been so grateful for all the support that we have had from you all over the years and the people who have taken time to write and send things to her.

Caitlin is currently holding her own, health wise, and we feel now that it would be nice to give her place to children who would benefit from your support who are perhaps in need more than Caitlin currently is. Thank you.

Update 13th January 2013

Caitlin has remained very well over the Christmas period, he new port that we had fitted before Christmas is working well, and she has healed well after her operation. We visited the clinic in Leeds on Thursday and were very pleased that her lung function has gone up from 76% to 87% and her weight has increased by 3 kilo and her chest sounds clear – so the steroids and itraconazole seem to have done their job. We are now playing the waiting game, as normally after we stop some of her meds her health deteriorates again and getting children with Cf through winter is always a challenge, so fingers crossed for the time being.

Caitlin joined Sea Cadets in York before Christmas and really loves it, she has just got her new uniform so really feels the part. I think she longs to be like her big sister and brother who are in the Royal Fleet Auxiliary, so sea cadets will be the nearest thing to a life at sea for her but she’s so happy. As a family we just cherish each day she is well and make the most of it, as we know that over time her health will decline, we just hope it is not too rapid and we do our best to keep that time at bay by doing lots of exercise. She is wearing us both out doing xbox kinect dance games at the moment!

Thank you again to everyone at Post Pals, friends of Post Pals and all the elves that helped out at christmas. We had sooooooo many lovely cards sent to Caitlin – thank you to everyone who took the time to send cards and write to us, Caitlin and I read each one and were very touched. Thank you to Grace and Wendy for their letters too. Thank you to Staff at Horseford infant school, Bethan, Katie Koskinen, Nigel Dixon, Christine Kay, Harrison, Tez, and Jessica, and to all those who we haven’t mentioned – your gifts were so nice and we always save Post Pals gifts to the end so that we can really appreciate things.

Every day we as a family are truly touched by people who take the time to think of us and send things to Caitlin. We can see the thought, time and care that have gone into everything she receives, be it a letter, card or gift. We have received some lovely things and we love the fact that people like to share their thoughts or lives with us through their post.

Everyone at Post Pals has a special place in our hearts, what they do for us families is truly amazing and so selfless. Thank you.

Update 19th November 2012

It has been another very up and down few months for Caitlin, we have spent a lot of time to and fro to the Leeds General Infirmary to try and get on top of her aspergillus infection, which has been a constant battle really. Her lung function dropped down to 65% which is low for her, so she has been on a constant barrage of medication, Itraconazole (which is a anti fungal medicine) and steriods, her health did decline for a while but fortunately she seems to be improving finally – with lung function back up to 76% so we’re getting there.

On top of this we suddenly discovered when she was having her portacath line flushed it caused her pain and after an xray it was discovered that the line had split and so the decision was made to take it out and have a new P A S port fitted in her arm. So, two weeks ago she was admitted for what was a 3 hour operation. She is fine now, still a little sore, but on the whole is healing well and is back at school.

Our one wish is to keep her at school for a full week. To some people this is not an issue but for us it is a genuine target. She misses so much school because of hospital appointments and illness, so we would give anything for her to just have a normal term. So fingers crossed we make it to Christmas uneventfully now – although winter always seems to bring with it it’s own challenges so we can just hope for the best.

A big thank you to Shehinah of Chad Varah primary school in Lincoln. Thank you for the most beautiful cards, especially the hand made ones, we can see how much time and effort has gone into them. Special thanks to Anne Bennett, Heikki, Wendy, Bethan and Sarah Fitzgerald in Texas, Becci Willets, Natashja, and Sarah G. The Halloween gifts were great too, thank you to Kerri Wood and Susan Cuin.

Update 16th September 2012

Health-wise Caitlin has had a fairly good summer with no IV’s needed, but over the last 3 weeks the dreaded Aspergillus seems to have reared its ugly head so we are hitting her hard with treatment again – 3 lots of nebulised antibiotics a day, 3 lots of physio and some oral medication which she said tastes horrible! Still, it seems to be helping, as in two weeks her lung function has gone up from 71% to 83% so thats good news. The hospital are now starting to test her for diabetes too. On our last visit last week they wanted to run some bloods, unfortunately it looks like her portacath may have given up working so we had to go through a rather traumatic time of her having to have bloods taken normally. So next visit i have a feeling we may be discussing her having a new port. Better now than when we need to use it suddenly for IVs. We’re awaiting results of the bloods that have been taken and other tests to see what else comes up.

On the plus side, she is still loving school and now being year 6 she feels very important! She has been given 3 jobs so wears her badges proudly.

She has also asked to be known as Caitlin K – i know its a little confusing but its something she feels very strongly about. She has had a tough time not seeing her dad so feels the need to identify i guess. We are not changing it legally though.

Thank you to Bethan for remembering Caitlin by sending her things from her wedding, it was very thoughtful and we will be sowing the seeds soon. Thank you to the kind person who sent her a beads set, Caitlin opened it without telling me who sent it, but she is thrilled and i am now the proud owner of new earrings. Thank you to everyone who has sent her post.

Update 11th April 2012

After what we thought was 8 weeks of good progress, it came as a bit of a shock when we went to clinic and discovered that Caitlin’s weight had suddenly dropped by 6kg and lung function is down to 77%. We have had some blood tests and cough swabs so are awaiting results. My feeling is that there is obviously some kind of infection brewing. We are back at Leeds next month so will keep you all posted as to how she is getting on.

On the whole she deals with everything in her usual manner, with a smile on her face and a determination to kick it! I wish it was so simple.

Caitlin is doing a run for CF 2k at Newby Hall next month so hopefully she is well for that.

Thank you to everyone who has set us gifts, letters and postcards, as they really do brighten her day and bring a smile to her face. Thank you for your special letters – Catherine, Claudia, Dani, William G, Hannah and Olivia. Thank you to Thomas Clapham School for their wonderful book and a special thank you to Imps Six, 5th Retford Brownie Pack, for their lovely box of treats. Thanks also to Marjolijn for the lovely stickers and thank you so much for the Mother’s Day treats.

Update 30th January 2012

Caitlin’s treatment has been ongoing since October last year, Aspergillus has been causing a lot of trouble and we have been on a constant stream of antibiotics, nebulisers and steroids. It has been a chaotic time for the family over the last few months and things have been tough but we’re over the worst now.

So a belated Happy New Year to everyone at Post Pals and all our friends and Pals.

Thank you to everyone who sent Cailin something at Christmas, whether it be a card, letter or gift. It really brought a smile to her face as she has been getting really down in the dumps with things. Things seem to be improving a little now fortunately, so fingers crossed. Thank you to Caitlin’s elves too who sent her Christmas gifts.

Update 10th November 2011

Caitlin has been fairly well and free from serious infections for the last couple of months, though she is still battling aspergillus but I think the steroids are helping keep things under control. She has been having a fair few problems digestive wise and we are having to fine tune her creon dose as there seems to be an imbalance at the moment and as Caitlin cannot absorb fat its important we keep on top of things. At the moment she is starting to miss occasional days from school with an upset tummy which she hates.

We are currently attending Leeds clinic on a weekly basis as she is undergoing therapy for her aversion to needles, but this is proving to be a challenge as currently we have no transport. Our car has suddenly died on us and looks unlikely we are going to be able to save it, so whilst we wait for our mobility car to be organised, getting to appointments is proving difficult. We are praying that we don’t get hit by too many winter bugs, but as a parent of a child with Cystic fibrosis, it’s realistically our worst time of year. So here is hoping this winter will be kind to her.

Caitlin is very excited about this Christmas as we are hoping to get to Bristol to have a family Christmas with her big sister Holly. She is home from sea for a couple of months so she is really looking forward to spending time with her. Her oldest brother who is also in the RFA has just left for 4 months at sea, so she is going to miss him.

Thank you so much to the guys at Post Pals and all their helpers as we really appreciate all you do. Your letters and cards, gifts and messages, are genuinely treasured and appreciated. Life in our household has been rather up and down recently so it is always nice to know that people are thinking about us. A special message and lots of love to our friend, Kate D, who is in hospital. We’re thinking of you.

Thank you to Rose Chambers and the Brownies from 1st Stambermill Brownies, Caitlin loved her letters and card, it was very special. Special thanks to Christine Harrison, Madison and Katrina for their lovely letters too. Many thanks to Wendy for my card making kit, Caitlin also loves her cat stickers and fairy making kit. Thanks to Post Pals for her Halloween goodies as well.

Update 17th September 2011

Caitlin has had a bit of a rough time over the summer. Apart from her usual challenges with her Cystic Fibrosis, she developed cluster headaches on a daily basis. They were migraines and she spent 2 hours everyday in agony and having to lie down in a dark cool room. The consultants are not overly concerned as they felt that these are probably down to the Aspergillus infection that she seems to be continually fighting. Yet again we are on a high dose of daily steroids and strong meds for that infection and on top of it she has been on a course of oral antibiotics for an influenza type infection.

We are also currently taking her for meetings with a psychotherapist to deal with her needle phobia. It’s currently going very well but because she has had such a rough time in the early days she has been terrified of any needles other than the one they use for her portacath.

She is really enjoying being in year 5 and has started swimming again and is doing really well with it. We have just acquired a tent so we hope that when the better weather comes next year we might have a go at camping for a few days. As always she is glued to the X factor and loves every minute.

Caitlin adores cats, and after we moved north we had to leave her loved cat with her father, she now barely sees it. I’d love to get her a new kitten but living in a rented house gives us a bit of a dilemma. I’m still pondering things, as I know it would give her a huge amount of pleasure, so I may contact the local rescue centre to see if we can foster any. Watch this space.

Thank you to everyone who has taken the time to send Caitlin post, she is starting to slowly write back to some, but whether you receive a reply or not, rest assured your mail brought a smile to her face.

Special thanks to Bethan, Anne and Kate and also to Dottie. Thank you to Susan Pike and Madison H who wrote to Caitlin from the USA. Caitlin also really loved her party bag from the party so thank you.

Update 26th July 2011

Caitlin’s health has been a bit of a rollercoaster again lately. We did well with our last course of treatment but it seems as soon as one course is done then infection starts again – Aspergillus again! So we are on steroids and voriconazole, which are awful as it has so many nasty side effects, but it usually works and lung function goes up for a short while. The consultants are now considering long term steroid treatment, so we will see how that goes.

We always travel to Kent for my job in the school holidays and on Friday (the last day at school) she came home with a nasty cough, high temperature and earache, so I consulted the local GP who does not think it is more upper viral, so I am keeping a close eye on things. If it gets any worse then i will make a 250 mile dash back to Yorkshire.

As ever, Caitlin tries so hard not to let her condition get the better of her, she is such a brave girl.

Thank you again to all those who take the time to make my little girl smile. Special thank you’s to Bethan, MJ and Anne Bennet. So many thank you’s in general I would like to make but the page isn’t long enough! Special thanks also to the institute of international de lancy in Switzerland. Thank you to all those who sent Caitlin lovely gifts, she really loved her Man United pictures.

Update 7th May 2011

Firstly, apologies for not being able to name and thank everyone who has sent Caitlin presents and mail in the last couple of months. The generosity of everyone who takes the time to send us mail always overwhelms us. We are always extremely touched and humbled.

Caitlin has been having a hard time health wise and it seems like we have been in and out of clinic constantly. Caitlin’s lung function has been decreasing since last October and was down to 59%. She had another two week course of iv’s as she has had pseudomonas and Aspergillus and unfortunately they have not really helped her. So the next course of treatment has been to change her medication to a stronger antifungal medication to combat her Aspergillus. This seems to be slowly helping but has some awful side effects including visual disturbances, hair loss, and it also makes her photosensitive so it means we have to cover her head to toe in sun cream all the time. As this is slow to take effect they have now put her on steroids, six per day for two weeks, then we have to reduce them. That takes her medication count to 19 tablets before school even starts! So it is about 37 medicines per day in total – we are surprised she doesn’t rattle. To top that she is losing weight so we’re doing our best to get her calories in but it is hard when she needs 2,500 per day.

We have had a tough week with the side effects, she has been experiencing stomach cramps which have meant that we have had to keep bringing her home from school and she is so pale now she looks like a ghost. Still, Caitlin is a tough cookie and keeps going the best she can. As her mum though, I must admit I think I have had the most worrying two months and we still have a long way to go.
On a positive note, she had a great birthday party. We took her to a place called potz of fun where her friends painted different cups, ornaments etc. The best bit though was the chocolate fountain which was a big hit.

Easter has been a busy time for Caitlin. She was lucky enough to go to Bristol to stay with her sister, Holly, and her boyfriend, Jeff, for a week. She was spoilt rotten and went to Bristol Zoo and the Aquarium. It was a special time as her sister Holly is in the RFA – part of the Navy – and is away at sea a lot. Her elder brother, Chris, is also at sea as a chef in the Navy and he is currently out in Bahrain serving. When they are home though, they do lavish her with lots of attention.

The highlight though was a week before, thanks to Post Pals and Me&dee Charity, for giving her the chance to go to see the X factor concert at Newcastle. She absolutely loved it. Her first ever concert! Her favourite is Cher. We do have another concert to look forward to now as I am taking her later this month to see Take That. It’s as much as a treat for me as it is Caitlin, but I think she will love the atmosphere, so I’m just keeping my fingers crossed that she will be well enough.

A big thank you to everyone who sent Caitlin birthday cards and postcards. She said she feels famous! Special thanks to Sarah G, Lauren and Bethan, and everyone who took time to write a letter. Special thanks again to Mj for her birthday gift and to everyone else who also sent Caitlin presents – she was thrilled and excited to receive them.

Again, huge thanks to Post Pals, it really has changed our lives. It has provided Caitlin with opportunities for special days out and experiences, a chance for us to make friends with other parents who are also facing tough challenges bringing up poorly children (especially as with a cf child they are not allowed to mix with others with the same condition due to cross infection risks), and to feel the warmth and care of people who contact us. It is so touching and we read every letter and card and each and every one of them makes a difference to our days. They really do bring a smile to a child’s face.

Update 9th March 2011

Well, it is now the end of February and Caitlin is still fighting two infections, pseudomonas and aspergillus. The treatment has been tough going, but just as we thought she had turned a corner and seemed to improve, the coughing has started again. Its slowly getting chestier now, so we are giving her extra antibiotics on top of the medicines she is already taking – last medicine count she was taking 14 tablets a day, nebulised antibiotics twice a day, plus nebulised dnase which thins the mucus, two oral medications and finally add to that the 17-20 creon tablets she takes with her food. I don’t know how she manages it. I am so proud of my little girl. Caitlin, as always, takes it all in her stride.

We have two things coming up over the next couple of months to look forward to, one is an amazing wish that has been granted for Caitlin – we are going to see the X factor tour in Newcastle at the end of March, and at the beginning of April we have planned a birthday party for her 9th birthday – she is having a painting potz party so is very excited.

She has been having a really fun time with her Post Pals puppy Lucky – brother to Dottie – and we have been taking him on lots of adventures. Caitlin has even done her own blog for him.

So we’re back to hospital on Monday next week. Fingers crossed we will see what’s going on.

A big thank you to the charity MeeandDee who have arranged for Caitlin to have a special wish granted.

Update 30th January 2011

Caitlin has had a tough time over Christmas. She is still fighting pseudomonas and aspergillus infections and is on such an array of antibiotics and nebulised treatments that she has days where she is just totally washed out and exhausted. On the whole though she keeps smiling and carries on.

To all those who sent Christmas gifts, to the elves and to those who sent cards, she was thrilled with everything, it really cheered her up. We are always so grateful of the time and thought that people put into their lovely cards and letters. Post Pals really makes a difference.

Update 18th November 2010

Caitlin has had a rough few months. We have been battling aspergillus and just when we thought we were turning a corner, she yet again has started coughing and lung function and weight is down. We are just embarking on two weeks of iv antibiotics which hopefully will do some good.

Caitlin is, as always, a happy positive and brave little girl. She said she’s determined to fight CF and if she goes to heaven she wants to be a blue angel.

Thank you to everyone at Post Pals and everyone who spares the time to write and send gifts. Caitlin gets so much enjoyment from them and I’m hoping that soon she will be able to start responding to some of the mail she receives. A special thank you to St Patricks RC primary school Cardiff for all of Caitlin’s cards, she really loved them. Thanks to Kara for the beautiful letter c sun catcher, it is now hanging in pride of place in Caitlin’s room. Thanks to Post Pals for the wonderful Halloween goody bags.

Update 12th September 2010

Caitlin has been undergoing aggressive treatment for a chest infection, Aspergillus, which has involved extra nebulised treatments twice daily, antibiotics and steroids. Touch wood, so far this seems to be working and she has made some good progress. We are getting set to start home iv’s soon as the hospital feel that it would benefit her to go back on them 3 monthly.

Other than that, Caitlin is enjoying being back at school, she is about to take up violin lessons and dance classes.

Thank you to Kara for her letters and cards, it is nice to hear from you as always. Thank you for the art kits we received care of Helen T, Caitlin especially enjoyed making the mirror. The doorbell for her bedroom has proved a really big hit so thank you Sheelagh Hawkins. Big thank you also to Bethan for the Man U stickers and wand and to Xena for the lovely cat card and SpongeBob pen – Caitlin really loved it.

Update 11th July 2010

Caitlin is still suffering with her chesty cough, it is more productive now and the decision has been made to put her on ivs again every 3 months. Her lung function had improved to 75% but we are still keeping an eye on it. We have two weeks until her next visit to Leeds for clinic visit, so fingers crossed we can escape more ivs before the school holidays.

Life has been very hectic in our household lately but I am pleased to say we had a wonderful wedding and Caitlin loved being a bridesmaid, it was a special day for us all.

Thank you to all those who have sent Caitlin gifts and cards, as always we are extremely touched by everyone’s generosity. Thank you to all the class of Courthouse Green primary school for all their letters, they were lovely and very special. Also, thank you to Viks and everyone involved in Post Pals for the huge difference you make to our everyday lives, you make our dark days that much brighter.

Update 17th May 2010

Just to let you know that Caitlin is going through a rough patch at the moment and we attended an emergency appointment this morning in Leeds to see a consultant. She has got another nasty infection and so will be starting another course of iv antibiotics early next week. She’s coughing frequently and its disturbing her sleep so she’s having a bit of a rough time of it at the moment.

Update 8th May 2010

Caitlin has just grown another infection which she is being treated for, but on the whole is doing ok. Her severe headaches have now subsided for the time being and we now think it was probably linked to an infection. We’d had to take her out of school most days when her headaches were bad.

We’re going to Leeds General infirmary for ultrasound scan next week, and her annual CF review is in June, so fingers crossed. Her lung function is currently continuing to be stable so she is able to get around with her friends and still do the same things. She is currently also really enjoying swimming lessons and doing cross country at school. As always with a lung condition, it can be a challenge, but she really loves it.

I would like to thank everyone for all their kind gifts, cards and letters this month. We couldn’t get to the door some days for the sheer amount of post! Thanks to Russell Howard’s show for highlighting Post Pals. I am slowly doing my best to try and respond to as many personally as I can – I think I am going to have to be Caitlin’s PA for a while! So many lovely handmade cards, crafted gifts, presents and lovely letters that cannot remain ignored. I am sure Caitlin will have acquired a fair number of new friends by the end of it.

So a huge thank you to all those lovely people who kindly took the time to send Caitlin post, the generosity of people often makes me want to cry. Thank you also to Post Pals for the Alton Towers tickets, we plan to use them at the end of the summer holidays, and it will be a real treat for Caitlin and our family. Thank you to Stitches of love and kindness for the beautiful cushion, the Jaxons for their blanket, and Dave Langdale for his Spongebob blanket.

Update 15th March 2010

Caitlin has really had a rough few months. Since June last year, we seem to have been battling infection after infection. Fortunately, after some excellent treatment, I think we have finally turned the corner. Her lung function has risen from 65% to 86% and the biggest current problem we are experiencing is that she is feeling extremely tired and seems to be getting daily severe headaches. The hospital thinks it could be down to dehydration. This always seems to be some challenge to overcome.

In general, Caitlin is about to start swimming every week with the school, so is looking forward to doing that and enjoys going out cycling. She is starting to get excited as mummy is getting married in July and she is being a bridesmaid.

Thank you to all the people who have kindly sent their best wishes and for all the books and craft kits that have been sent which have been very useful for the days when Caitlin hasn’t been able to attend school. A godsend!

Update 30th January 2010

Caitlin is still suffering from chest infections and has been since June now. We have been throwing all sorts of medicines and treatment at them but they don’t seem to be clearing, so we’re going to St James hospital (Leeds) again on Tuesday to start another two weeks of intravenous antibiotics. This is the third lot in 7 months so things have deteriorated a little. Fingers crossed this final push will clear whatever it is.

Apart from that, Caitlin is keeping busy. She has just started drama club in school and we are going to start going swimming regularly as part of her physio regime.

We are going to Kent for half term week where she will attend playscheme and visit her old friends, so it should be an exciting week.

A special belated thank you to the George Washington class in the USA, for all their Christmas cards. We will be sending a thank you letter soon. We had a lot of handmade cards from the children that arrived this week, so that was very special.

Update 20th January 2010

Caitlin is currently doing ok. She is still fighting what we believe to be the same infections since June. They seem to be under control but we have not managed to eradicate them, which means that she is still having disturbed nights coughing and has recently also taken to sleepwalking and more night terrors, so she has a very tired mummy at the moment!

She continues to take her daily medication and have physio sessions but her weight has become an issue as over the last 3 months. A child with Cystic Fibrosis needs at least 2000 calories a day, so eating and more eating is the issue of the day.

We had a lovely Christmas and thank you to everyone who took time to send us good wishes and gifts. The generosity that people show us never fails to touch us. Caitlin was very very excited to receive regular letters from the elves and reindeer and I think that was a real high point of her Christmas.

Thanks go to Shiyu from Kochi Japan for her handmade card, Rock Ferry high school in Birkenhead, class 4ap St Hilary’s school for the lovely cards, Jack and Erin for their photo, Despina for her lovely cards and postcards, and Caitlin’s two special elves Liz and Emma. Thanks also to Santa’s reindeers for their lovely cards and presents. A big thank you to you all. I am always humbled by the amount of mail that Caitlin receives and the love and support that is shown to us as a family. We are always grateful for Post Pals hard work and their generosity.

We are back at hospital for our next review at clinic on 8th February, so fingers crossed.

Update 8th December 2009

Caitlin is still having a bit of a rough time of it and is still undergoing her treatment for pseudomonas and another infection, so it limits her being able to go out and about with her friends. She does have good days; I just wish the infections would clear as her coughing disturbs her sleep so much.

We are just hoping that she remains fairly well through the Christmas period so that she can enjoy herself. Caitlin is very excited about Christmas and fortunately she still believes in the magic of Father Christmas.

We would like to take this opportunity to thank everyone at Post Pals and all those kind people who take the time to spare us a thought and send cards and gifts. Every one of them is truly appreciated and valued; your kind wishes are very important to us and help us realize we are not alone. The joy that Caitlin gets when she receives mail makes a world of difference.

Special thanks this month to Wendy, Kate Dee, Norma Lumley, Valerie Simms, Caroline in Surrey and Ruby – all your cards and wishes have brightened Caitlin’s day. We really love the hand made cards too and are grateful for your thoughts.

We wish everyone best wishes for Christmas.

Update 8th November 2009

Caitlin has just finished her course of iv antibiotics and is feeling a lot better, although she is still receiving intense treatment for 3 difference lung infections. She has had to miss 2 weeks of school because of the threat of swine flu so it has been hard for her having to stay home, so the little craft kits that people have sent have been a Godsend.

Caitlin did go to Legoland and i would like to thank Post Pals for giving her the chance to go, she said it was her dream to go there!

Thank you to everyone who has sent good wishes our way, it has been a big help over the last month. Caitlin received some lovely craft packs which she absolutely loved, and the books were great as she is reading properly now.

Update 21st October 2009

Caitlin is having a tough time right now; she has grown pseudomonas and is on a really intensive treatment regime of drugs every day, as well as doing home IVs.

She has a bit of a temperature today so am keeping a close eye on her and to top everything off, we now have had to take her out of school because there is suspected swine flu going around. She is home bound until she has had the swine flu vaccination.

Update 1st October 2009

Caitlin has had a rough few months over the summer and has been struggling to clear a lung infection. Her lung function was dropping rapidly but now i am pleased to say she is finally making some improvement. She has been fighting an infection called Aspergillis, it’s a fungal infection so it’s going to take around 3 months of medication to clear.

Caitlin is currently on steroids and has been taking up to 6 steroids a day, which in turn has made her put on weight and she now has chubby cheeks!

Caitlin attended St James’ hospital in Leeds and her lung function has gone up to 75% so that’s great.

Thank you to all that continue to send Caitlin mail, i have just started to teach her to use the internet so that hopefully now i will be able to help her send some replies to all the wonderful people who send her things.

Thank you so much to all at Post Pals for the Legoland tickets, Caitlin will be visiting there at half term so we will be sure to take lots of photos. She is very excited about going as she has never been there before, so thank you again.

Update 17th August 2009

Thank you to Wendy for her lovely hand made card, to Kate Dee and also Tracy in Bristol for your cards and messages.

Update 14th July 2009

Caitlin has just finished her course of IV antibiotics and is now back to enjoying some outdoor fun with her friends. IV’s really restrict what she can do due to having a line in situ for 2 weeks. Her lung function is currently up a bit more but she’s already coughing again!

The post she has recently received really cheered her up whilst she was having her treatment, so thank you to everyone. Thank you for the lovely SpongeBob and the personalised necklace – Caitlin was thrilled. Also, the most beautiful quilt arrived from Lovequilts UK today, so a huge thank you to all involved in making the quilt. These gestures really are appreciated.

Update 29th May 2009

Caitlin is in reasonably good health at the moment, although is on a course of extra antibiotics for a bad cough which wont seem to shift, and she is starting to look a little weary in the heat which is normal for most people with CF. Our next appointment is in Leeds in a couple of weeks when we go for our Annual Review so we will see what they say.

Caitlin is having a lovely half term and is looking forward to her big sister Holly coming home soon as she is in the Navy. At the moment she absolutely loves Britain’s Got Talent and i cannot get her to bed until it is finished! She has also gone Garfield and SpongeBob mad and has started a collection of SpongeBob things.

A special thank you to all those people who send Caitlin mail from overseas. Post Pals means so much to us and helps us get through the tough days. It’s lovely to know so many people care and bring a smile to Caitlin with the mail they send. Caitlin is just starting to read some of the mail for herself too, which is even nicer. So thank you to everyone for taking the time to think of us.

Update 11th April 2009

Well, we are now settled in Yorkshire and we love it. Caitlin loves her new school and is already making friends. She really likes our new home and there are lots more outdoor activities to do here. At the moment we have a duck with her ducklings who have made home in our garden for a while, so she is out everyday checking on them.

Her health has remained pretty good so far. We are starting to set up all her health care here and are based at St James hospital in Leeds. We now have to go to hospital every 8 weeks to be seen at clinic there, with a visit to the local hospital in between. She is coughing again and is on extra antibiotics so I’m hoping that it will be enough to fend off any infection. They have changed some of her medication around so we are all getting used to new routines. She’s on 9 tablets each morning along with her nebulizer, one at midday and another 3 in the evening. Add to that her 17-20 creon a day with her food and i don’t know how she does it. She’s so good at swallowing all her meds.

Thank you to all who have sent us best wishes in our new home cards and all the things that have been sent for Caitlin’s birthday and Easter. Thank you to all the following people for their special birthday gifts and Easter wishes –  Erin F’s Nan and Granddad, Wendy, June Junko in the USA, Sarah Gilligan in Lancaster, and Amy Singleton in Ayrshire. Special thanks to the Post Pals team for the egg decorating kit and the lovely brown teddy. I am always overwhelmed by everyone’s generosity. Best wishes to all other Post Pals and their families for Easter.

Update 1st February 2009

Caitlin is generally well at present, and with our forthcoming move to North Yorkshire in 3 weeks time, we have been signed off from Kings College Hospital and are transferring our care to St James hospital in Leeds.

We are still struggling to keep her in school for a full week as since summer Caitlin has suffered from the usual coughs and viruses that go round, but because of her CF they just really seem to hit her harder and knock her off her feet for a day or so. Still, she keeps smiling and is always eager to go into school.

We are coming up to her 4 year anniversary since being diagnosed and when i look at how far she has come, from a malnourished very poorly little girl who was fighting for her life, to a child of normal weight, height and enjoying life as any other 6 year old, she really is a brave girl.

Without the support of the people around us, from the doctors at the hospital, the community nurses, right down to everyone at Post Pals, i really don’t know how we would as a family got through so far. So thank you to everyone for the hard work you put in, it really does make a difference.

Update 1st January 2009

Caitlin had a wonderful Christmas this year as all the family were around which was especially nice as this coming year is one of big changes for us. Caitlin and i have an impending house move to Yorkshire, which unfortunately means she will see less of her big brother and her dad, and also big sister Holly, as she is going to sea with the royal fleet auxiliary for 4 months from the end of February.

So, with a new school and new hospital team to get to know, it will be a bit of a challenge for Caitlin. I’m sure she will cope really well.

Just before Christmas Caitlin was invited to a party laid on by Invicta FM (our local radio station) as one of their Christmas stars. She had lots of fun, met Santa who arrived in style via helicopter, and was generally spoilt rotten. She also got to meet x factor star Austin Sage.

Boxing Day was eventful as when Caitlin got up in the morning we found she had the dreaded Chicken pox! So we have spent the last week itching and covering ourselves in calamine lotion. Maybe next year we will have a spot free, infection free, Christmas!

A big thank you to all who took the time to get presents for Caitlin, she loved them all, and it looks like I’m going to have a very busy month or two making things with her as we have lots of lovely creative kits. Special thanks to Judith, Chris, Paul and Rebecca, Maria and Michael, Alan and Aimee in Germany, Julie, Judi, Brian and family, and our very special Christmas elves Sue and Peter Barrett.
Thank you to all at Post Pals who made Caitlin’s Christmas all the more special this year and a happy New Year to all.

Update 2nd December 2008

It’s been a difficult month for Caitlin and the family. Caitlin spent 2 and a half weeks with a bad chest infection and up all night coughing constantly so she missed out on a lot of school. Despite all this Caitlin is a tough cookie and puts a smile on her face each day.

We are in the middle of not only Christmas preparations but house move preparations as we are moving to North Yorkshire at the end of February, just after her planned iv’s have been done, so there is a lot to organize with the transfer of treatment etc. Caitlin is looking forward to starting a new school though and we plan to start swimming and horse riding lessons if she is well enough.

Caitlin’s Nan is also currently unwell in hospital with brain cancer and is not expected to see Christmas, so any extra prayers would be gratefully received.

We would still like to express our thanks to all at Post Pals and everyone who send Caitlin mail, it really brightens her day, and we appreciate everyone who takes the time to help put a smile on her face. May we also take this opportunity to wish all other children and parents and the people at Post Pals a wonderful Christmas.

Update 6th November 2008

Life here has been so hectic. We went to Australia for a once in the lifetime holiday at the end of August. We are also moving to Yorkshire next year, so we are busy organising a move.

We are going to Kings today for a check up and to discuss the next course of IV’s. I think they will be just after Christmas.

We appreciate what you guys do for us all and the delight Caitlin gets with all the mail that comes our way is just immeasurable. It really does make a difference to us and brightens up some days that seem very bleak and when I’m feeling down it means a lot to know other people.

Update 30th August 2008

We are currently on a trip of a lifetime staying with family in Australia and Caitlin is experiencing the charms of living with kangaroos on her doorstep. There are also two horses which she is enjoying treating to the odd apple and carrot. It’s not quite spring here yet so we are having typical English weather, but it’s just right for her CF. She is still suffering from a bad cough but it does seem to be improving a little now as we have come equipped with lots of extra antibiotics.

Special thanks for the giant bowling that Caitlin has just received, it was lovely of Samantha’s parents. We are away so have not yet seen it but I’m told by Holly (Caitlin’s sister) that it’s amazing. Thanks also for the Thorpe Park tickets which we plan to use when we get back at end of September.

Update 16th July 2008

Special thanks this month to Julie for all her little fun cards and thank you to Despina for her postcards. Caitlin really loved all her craft kits she received too, she adores making things. Caitlin has been a little under the weather this month, so when she hasn’t been feeling well the little craft kits really seem to perk her up. Thank you to all who take the time to find these wonderful ideas for her.

Update 8th June 2008

Caitlin has just returned from a week in hospital. She went in for a routine exploratory bronchoscopy and to start her ivs off. When she was diagnosed they found the bug pseudomonas which is a pretty serious bug for a child with CF. She hasn’t tested positive for nearly 2 and half years with it, hence the exploratory operation to see if it is still deep in her lungs. So far the results that have come back show one infection but we are still awaiting news on the pseudomonas. We should hear on Wednesday. Caitlin has had a bit of a rough time with the operation and took a lot longer to recover from it, they had problems with her breathing during the operation because of the sheer amount of sticky thick mucus that they found.

We are now back at home and she is getting back to normal slowly and is currently on home ivs 4 times a day, which is pretty restricting for her, but like always she smiles and gets on with it. When i mentioned to her one day that i wish i could take CF off her she said “i don’t mind taking my medicine mummy”. Like all of the children on Post Pals, she is a total star.

We are hoping to be able to go holiday to Australia at the end of august, a once in a lifetime trip for both of us.

Caitlin really loved and got so much enjoyment out of the crafty items she received this month, especially the peg dolls. Thank you again to all that take the time and effort to brighten Caitlin’s day.

Update 16th April 2008

Caitlin is currently well and has managed to steer clear of infections for the last couple of weeks. We are due to Kings at the beginning of May for an annual review with the CF team and with the liver team also. So fingers crossed.

We then have planned IVS on May 18th so we are going to Kings again for our regular hospital admission.

Thank you for all of the wonderful birthday and Easter cards. Caitlin was overwhelmed and happy to have so many. Special thanks to the following people: Julie Barrett, Kate, Nicky, Liz, Maria C, Bernice, Callum and Emma, Helen T, Cara, Judith, Erin F’s nan and granddad and St Matthews Sunday school. Thank you to everyone who also took the time to send gifts, Caitlin loved them.

Update 1st March 2008

Caitlin is continually fighting off one infection and then another one starts. We have just completed 7 weeks of different oral antibiotics and we are due to attend the CF clinic again on the 12th March to decide when the next batch of iv’s needs to be done. We have recently began to try and stretch the amount of time between courses of iv antibiotics as up to now she has remained fairly well.

We are due for a liver review in March so, as always, we’re a little nervous as to what that might throw our way.

In herself though, Caitlin is her usual bubbly self, running around and not letting anything bother or faze her. I continually marvel at her bravery and determinedness.

She loves school, and doing anything outdoors. We have just started to take her swimming again which she loves too.

A lot of changes have been happening at home too, so it has been a difficult time for us all, but we are always sooooooo grateful for the cards, letters, gifts and emails that we receive for Caitlin. So thank you to everyone for taking the time to brighten her day.

Update 1st February 2008

Caitlin is currently well and we are continuously fighting off all the usual winter colds and trying to prevent chest infections. We are due to go to kings in London on 6th February for a clinic review, to book impending iv antibiotics and liver review.

Our family has been through a tough year last year, but we are now looking forward positively.

Thank you for all of Caitlin’s wonderful gifts, we are always amazed by people’s generosity and are truly touched.

Update 9th May 2007

Caitlin is currently has yet another chest infection, which we are fighting with various antibiotics. Hopefully we will be able to fend this infection off without another session of iv antibiotics.

We are due at Kings College hospital in London on May 25th for her first annual review. This entails scans, chest x-ray, lung function and blood tests, as well as a thorough examination, evaluation of her diet and physio and medication review, so it will be a long day.

Caitlin is mainly doing really well, her liver has stayed normal and the disease has not progressed at the moment. She is running around trying to be a typical little girl. So we are enjoying the good days and riding through the bad ones.

Update January 2007

Caitlin has just had a wonderful christmas, she finished two weeks of iv antibiotics a week before christmas, but has already developed yet another infection, so we are starting her on another course of oral antibiotics. Her health has remained steady so far, have had some concern over her liver disease which is being monitered regularly. Caitlin continues her regime of several oral medications twice a day, liver medicines, nebuliser 3 times a day and physio twice a day. frequent clinic visits and hospital admissions are still regular and will be indefinatly. Its nearly two years since caitlins diagnosis and i know that everyone is amazed at her recovery from the pneumonia and since her treatment for cf and liver disease has begun her health has really improved she is like a different child now. Hospital staff are continually amazed at the fact she is still here with us after her bad start. She is a brave little girl of whom we are very proud.

Cannot thank everyone who helps and supports us enough, every letter and email, card and postcard i keep in a special box to remind us of how many people think of her.

Caitlin has now moved on from Thomas Tank Engine and loves Dora the Explora and numberjacks, and anything girly (especially jewellery).

Update 21st June 2006

Caitlin has now been on IV’s for almost 3 weeks. We went into Kings hoping for just a 3 day stay, but due to a reaction with an antibiotic and her liver we had to change to another one and were kept under observation until the friday. We were finally allowed home on IV’s and then going back to Kings the following week for blood tests and yearly review – e.g. lung function tests, swabs, general examination by doctors, physio and dietician. As she was still coughing, it was decided to keep her on IV’s for a following week.

We returned to Kings today for blood tests etc and were told that her liver bloods have gone up. They don’t think its anything to be overly concerned about, but they will let me know tomorrow what today’s results are.

They have also talked about a treatment called Dnase – it’s a nebulised enzyme that helps thin the mucus, loosening it enough for it to be coughed up – i know it sounds awful (!) but apparently Caitlin is still too young to bring anything up. Once she does though the benefit is that they will be able to test it and find out what infections she has got and treat it more accurately. Despite positive cough swabs, it is still thought that her lungs are already infected deep down with the pseudomonas bug – which you pretty much can’t get rid of once infected as it’s resistant to most antibiotics. Dnase will in effect improve Caitlin’s lung function and hopefully keep it from deteriorating too quickly.

Because Caitlin is starting Dnase, she will be entitled to a free Eflow nebuliser. These are brilliant – it currently takes us 20 minutes for neb colymicin twice a day – with the Eflow it will be down to 5 minutes! Her Dnase will take between 1-2 minutes and it is portable and not noisy – isn’t the art of technology wonderful? It will certainly make life easier for both Caitlin and me. She is not due to start this until September as all the paperwork has to be done.

Next hospital admission will be September 3rd – hopefully with another on the December 3rd as we are trying to make sure she is fit for starting school in January. We are also off to Darent Valley for outpatients’ clinic on August 16th.

I am just keeping my fingers crossed for tomorrows liver results.

Update 16th June 2006

Caitlin is now a year since Diagnosis of Cystic Fibrosis and Liver disease. She has made immense progress, she had put on weight so no longer has the NG feeding tube and the new medications have hugely improved her way of life. Caitlin is now a totally different child to a year ago.

Her lungs have already slightly deteriorated but her liver functions have improved. Caitlin is reviewed at Kings College hospital every 6-8 weeks with her cystic fibrosis, and every 6 months with her liver disease. Fortunately she has stayed reasonably well, although we are now on our 3rd week of iv antibiotics to clear an infection, and she had a bad reaction to one of the iv antibiotics recently so that was a fairly worrying time.

Caitlin is very brave and takes everything in her stride. We have now also just bought her an 8ft trampoline for the garden for physio time.

She is due to start school full time after Christmas but until then she attends a nursery every morning and loves it. She is finally trusting people again and making new friends.

We can never predict how or when the CF will really take hold, so all we can really do is make sure she stays as well as we can for as long as we can. We continue to live each day to day, and pray for a cure. We hope our little girl will grow up and do something bold with her life.

Post from Post Pals has made a huge difference to our lives, we know that there are people out there thinking about us and that brings us great comfort. A special thank you to Victoria for all the goodies she sends to Caitlin, she loves them.

Update 23rd December 2005

Many thanks to everyone who has sent Caitlin cards and gifts, we are truly touched. She is getting really excited about Christmas now, so touch wood she stays well for the next week or so.

Update 1st December 2005

Caitlin is doing ok at the moment, we have another clinic tomorrow at the local clinic, she has a slight cough but is on strong antibiotics so we are hoping to avoid IV’s before Christmas.

She’s getting all excited about Christmas as its will be the first Christmas she will be well (hopefully) so will be able to enjoy it.

Update 14th October 2005

All went well with Caitlin’s operation. We went to Kings last Wednesday and they fitted her port on Friday. It’s already made all the IV’s so less traumatic and she loves her wiggly and her bessie bump, which is what we’ve called it.

Things are still manic as she is still on two weeks of IV’s, so although we moved down to our local hospital, I still have at least another 5 days sleeping at the hospital. We are now allowed some day release though.

All being well, the next course of IV’s will be in 3-4 months and they will hopefully teach me up at Kings to administer them myself, so it will greatly reduce hospital stays.

Caitlin is doing well at the moment although she does have her days and when you’ve been cooped up in a room with her 24/7 it’s hard sometimes. She can be challenging!

Anyway, your post always brings a squeal of excitement from her, and we are really grateful for all the lovely things you send.

Story written 2008

Charlie was unwell when he was born with breathing difficulties and was put on CPAP to help him, although doctors could find no reason for this. After 2 weeks he was allowed home but had trouble putting on weight. He was always wheezy and was given a reliever inhaler. At 3 months he developed a chest infection; from then on he had one roughly every month and was in and out of hospital. It wasn’t until the following January that he was referred to the respiratory specialist at his local hospital. On Charlie’s first appointment he had lots of tests and a chest X-ray taken. He was immediately put on steroids and given a steroid inhaler along with antibiotics and vitamins and referred to another hospital – the Royal Brompton in London.

Charlie has continued to be unwell and in current months he has been particularly unwell after developing pneumonia. He has grown a lot of bugs on cough swabs, pseudo, influenza, and strep to name a few.

Charlie has a lowered immune system and needs some help to digest his food properly as he has a very acidic tummy. All tests Charlie has had have been inconclusive and not shown any one particular illness. However, he is now being treated as if he has Cystic Fibrosis as this seems to be the best way of managing him. In any one day Charlie takes 2 types of antibiotic, 3 different liquid medicines (one being vitamins and the others to help him digest his food), a power, steroids and 3 inhalers.

Charlie also has to have chest physio twice a day to help him move the thick secretions that are in his lungs. When he is suffering from an infection, this is increased to three times a day. He currently attends 3 different hospitals at least once every 4 weeks and he also sees a physio ENT specialist and has his own community nurse.

Despite all this, he is a very happy boy who when is well enough attends a pre-school and just loves having fun.

Update 11th May 2015

Charlie is now moving on from Post Pals and we’d like to thank everyone for all of the lovely post and emails the boys have received over the years. They really have made a huge difference to us at some really horrible times. Thank you to everyone at Post Pals for all the brilliant work you do to put smiles on the children’s faces, it is amazing what you guys do.

I would like to wish everyone all the best for the future and thank you once again for everything.

With kindest of regards,
Emma, Ollie, Charlie and Freddie xx

Update 10th August 2014

I’m so sorry for the very long gap in update. Things haven’t been very good this year.

Freddie has been very unwell and we are now at the point of discussing bone marrow transplant for him. We are also currently waiting for him to have a gastrostomy fitted so that he doesn’t have to have an ng tube permanently.

Charlie’s diabetes has been quite hard to control and he’s been having lots of vasculitis flare ups. He has full time 1:1 at school now to help him with everything which has proved to be the best thing they’ve done for him. I’m currently concentrating on having as much fun as is possible with the boys between them being in hospital as well as working and trying very hard to complete my teaching qualifications.

We are very grateful to Post Pals and everyone that sends us post. We also have a P.A. to help with some things. I’m sure you understand how difficult things are having two children with such intense medical needs and as I say, Freddie is in hospital more than he’s home.  Unfortunately heavy iv antibiotics are not working as they should and he now has glucose handling disorder and a type of anaemia which makes the red cells smaller. I can’t remember what its called but it is caused through him being chronically unwell.

Update 28th September 2013

Charlie hasn’t been great. He now has type 1 diabetes to add to the list, as well as the vasculitis and immune deficiency. He has been growing some odd bugs in his sputum as well as our old friend pseudomonas. He now on nebulised hypertonic saline and colomycin twice daily. We have also been awarded direct payment in order to secure a personal assistant for the boys as their medical load is pretty intense. Charlie is also due to start counselling as he’s finding things hard to deal with.

We were at GOSH and they told us that they think Charlie’s condition is progressing much faster than first thought. They have taken DNA and more blood for genetic testing. Unfortunately, Charlie is unfit to leave the country at present so his make a wish trip has been changed to a fantastic weekend in London, ending in a trip to see Charlie and the chocolate factory and a spree in Hamleys, which will be great and is something for him to look forward to.

Freddie currently has a chest infection and is on cipro. He is loving pre school but it is very difficult keeping him away from all the bugs going round.

Thanks to everyone for everything they send the boys as it really cheers then up. Big thanks to Post Pals.

Update 9th August 2013

Sorry it’s been a while. Charlie’s not been to good for the last couple of months. He’s got reduced lung function and developed quite bad clubbing of his fingers. He’s also had a ct scan which has showed some changes to his lungs. He’s been started on nebulisers, had his antibiotics changed, and we’re working really hard on physio. Most recently Charlie has been diagnosed with type 1 diabetes. He only came out of hospital on Wednesday evening. He is having to have 4 insulin injections a day and 8 blood sugar tests. He’s coping very well with it all and makes me so very proud. I on the other hand am feeling quite angry about the whole thing and feel it is very unfair, but I’m sure we’ll soon be on an even keel again. It means many more appointments, a lot more treatment and some getting used to. We will soon be getting a carer to help us at certain times of the day as Charlie and Freddie’s regimes are getting more and more complicated so I’m hoping that will help make for a less stressed house!

As always, thank you to Post Pals and to everyone that sends the boys mail.

Update 29th April 2013

Charlie hasn’t been great since Christmas. He has been having lots of chest pain, coughing, feeling sick, headaches, aching joints, and is very tired. His immunoglobulins were dropping and we’ve noticed before that when this happens Charlie is unwell so his treatment has been increased and hopefully this will help keep his immunoglobulins up.

He has just finished a two week course of iv antibiotics and seemed well for a few days but he is now coughing again and complaining of chest pain. So we’ll see what happens. He’s due to go into the Brompton in the next couple of weeks to have a bronchoscopy and depending on what they find they will decide whether he, like Freddie, should be started on nebulised antibiotics and hypertonic saline. Charlie and Freddie both have CT scans next Friday to see how their lungs are doing.

Charlie has missed a lot of time from school lately and is finding it all a little difficult. On the up side, Charlie has been granted a wish from the make a wish foundation to go to Disneyland and that is giving him something positive to look forward to.

The boys have lots of appointments coming up, as well as their 3 weekly infusions. Lately, we’ve never been away from the hospital. Freddie hasn’t been doing well, he’s been on iv antibiotics lots and was on them for 3 and a half weeks in December and again for two weeks before Charlie started his. In between, he has had countless oral antibiotics due to growing lots of bugs in his chest due to continuing growths of pseudomonas and staphylococcus aureas. He is now on nebulised drugs including alternate tobramycin and colomycin. It has taken him a while to get to grips with it all but he is doing. Olliver has been ok apart from missing out on time with me.

Thanks again to Post Pals and to everyone that sends the boys lovely mail, it is helping make a difficult time better for them and it is very much appreciated and really cheers the boys up.

Update 4th November 2012

Charlie has been up and down lately. He’s had a few tummy upsets and a chesty cough which ended up with him on cipro but luckily that did the trick. He’s also been having lots of headaches, some of which are very bad, and he just goes to bed. He gets very upset and cries which is very unlike Charlie. They are causing him to vomit so I’m pretty sure they’re migraines.

Charlie has also just been diagnosed with vasculitus which is basically leaky blood vessels. This is causing him quite a lot of intermittent joint pain and we think it’s also causing the headaches and quite bad nose bleeds too, but the standard treatment is immunosuppressant drugs which obviously Charlie can’t take so we are waiting for GOSH to come up with a miracle at the moment!!

Charlie, as always, is a lovely boy who takes it all in his stride, although he does of course get fed up of feeling poorly and is starting to question his condition a lot lately asking why he and his brothers have it and why I gave it to him! Which as I’m sure you can understand is very hard to try and explain to a 7 year old and a little upsetting I have to admit.

All Charlie’s treatment continues to be the same although we are having more done locally now which is great as getting up and down to London every few weeks for the boys to have their treatment was hard work.

Thanks to everyone for all the post as always. Thank you for all the presents and DVDs etc the boys get, it is all very much appreciated. As usual, a big thanks to Post Pals too, you do a fab job.

Update 8th March 2012

Firstly, thank you to everyone who sent the boys letters cards and gifts this month as they’ve loved everyone of them.

Olliver has been quite well other than joint pain and Freddie has finally had his port fitted and started treatment. He’s already had one infection since having the port fitted so it’s been fab already! Charlie is currently in hospital with a chest infection and a small area of collapse in his lung. He’s feeling pretty rubbish and has a high temp and been vomiting. However, when you ask him how he’s feeling, his standard reply of ‘I’m fine’ is all he says! He is clearly not fine and got quite upset during the night as he felt quite poorly. We are hoping to go home ASAP and carry on with the Ivs at home, but at the moment they won’t let him home till they’re happy he’s going in the right direction, so this could be a long 14 days for him!

Again, thank you yo everyone who has been in touch with the boys and also for the emails Charlie has had as he enjoys me reading them to him. Right, I better get back to him as we are reading Horrid Henry books at the moment – he suddenly gone mad for Horrid Henry – I hope he’s not taking tips off him though!!

Update 5th January 2012

Firstly, thank you to everyone for all the Christmas gifts for the boys and the letters from the reindeers – they loved them all.

Charlie has been doing quite well, he’s had a few low grade infections that have been treated with extra oral antibiotics, but is doing quite well overall.

However, he is struggling quite a lot at school. He has noticed that he is different to his friends and doesn’t really like this. He has started to say he doesn’t want physio anymore and asks when can he stop taking all his medications. Sadly, I’ve had to explain to him that he won’t be stopping his medicines and have explained in a simple way (that he can understand) about his condition. He seemed happier after this and understands a little more.

He is very behind at school with his written work and is being investigated for dyslexia. He is finding this very difficult as all his friends are in the top group and he constantly compares himself to them. It makes him sad that he is not as ‘good’ (his words) as them. This is becoming a big problem and he is not enjoying school like he used to. On the plus side, the school are working very hard with him, and in the afternoons he does work with a TA independently from the rest of the class. They are also modifying the work they do as a class for Charlie so that he is able to take part as well to try and boost his confidence as he is a very bright boy. After I had spoken to his teacher he said to me ‘I know you were talking about me and how rubbish I am’. He then went on to tell me he hates his life because of all the medication and hospitals etc. I spent a long time reassuring him and reminding him of all the good things he does etc. He seems better at the moment and just started back at school yesterday, so we will see how he goes.

He’s still having his regular plasma infusions and all other medications and we may soon need to think about replacing his portacath as it is very small. His consultant is leaving it as long as possible though as anything like that is obviously an infection risk.

Olliver is doing very well. He’s loving senior school and has been quite healthy. His immune system is still doing silly things but is no where near as bad as Charlie and Freddie. He’s still on his regular antibiotics and inhalers but other than that is doing great. He will have more bloods done in February to see if his immunity had deteriorated any further.

Freddie has been another story. He has been very poorly (hence the lack of updates) as we’ve been in and out of hospital a lo. We are now currently waiting for him to have a port fitted and begin plasma therapy. He was booked to have this on the 16th September but was too poorly to go under anesthetic. His immune system is very bad and he is currently neutropenic as well. He’s had sepsis infection, staph aureus pseudomonas, and moraxella infections in his chest, as well as ear infections and tonsillitis, all needing iv antibiotics. He also has a primary immune disorder and will be starting treatment as soon as his port is put in. His last lot of ivs (two weeks ago) was horrendous and he now has no vein access due to them being used so much. We had to resort to IM antibiotics in his thigh for 10 days and high dose oral antibiotics. They were not what his consultant wanted, but as i say, vein access is now impossible and he couldn’t go under anaesthetic as his chest was too bad, so that was the compromise.

Anyway, thank you to everyone who sends gifts, letters, cards and emails all year round, its very much appreciated. Again, thank you for all the Christmas cards, gifts and letters, they were all lovely and the boys loved them.

Carry on with the great work Post Pals, you do a fantastic job.

Update 10th August 2011

Charlie has not been too bad. He’s had a nasal infection which appears to have gone on for some time but we finally seem to have got on top of it thanks to a new antibiotic and nasal disinfectant. He then got an infection in his eye which he needed antibiotics for and this is clearing up thankfully. To round this month off he then fell down a climbing frame feet first, it was quite a height and he ended up hurting his left foot. After a quick X-ray we discovered that thankfully nothing was broken. However there is soft tissue damage so he has his leg in a support bandage and has been told to stay off it for a short while and keep it elevated as much as possible. Charlie, being the active child he is though, is doing too much on it when it feels slightly better and then is in agony with it and gets to the point where he can’t walk at all on it. Short of strapping him down though I can’t keep him still!!

He managed a good lung function test at his review last week which we were pleased with and all his medicines were left the same, so all in all he’s not doing too badly at the moment.

Olliver has not been too bad and is enjoying the summer holidays but is excited about starting senior school in September.

Freddie has been doing quite badly and he has been started on twice daily chest physio, daily antibiotics, vitamins, inhalers and Gaviscon, so we will see if any of that helps. He and Charlie have hospital on Tuesday and then all the boys have immunology clinic at the end of September, so hopefully all the results will be back from Freddie’s immunology screening and we will know for sure if he has the same condition as Charlie.

Charlie also begins genetic testing in September and will be taking part on some medical research to hopefully shed more light on the condition and primary immunodeficiencies in general.

As always, thanks to Post Pals and everyone who sends the boys things – it makes such a difference.

Update 17th April 2011

Charlie’s had an up and down month. He’s had another chest infection with three weeks of cipro and was booked in for iv antibiotics again even though he just finished a course about 9 weeks ago.

Anyway, he seems a lot better now and thankfully has not had to have the ivs. He was at hospital last week and they said his air entry is much better and he looks a lot better. He’s having to work very hard with his physio as he is having problems with the right lung where he keeps on getting reduced air entry due to consolidation.

He’s getting quite tired lately and has started to notice a difference between him and his friends. The other day he came home from school and was really upset as all his friends had a bronze badge for attendance and he never got one. He was so upset and said he’s never going to get one because he always has to go to hospital. I felt really sad for him. I’m going to speak to school and see if there is anything we can do for him to earn a bronze badge.

Speaking of school, there’s still lots of work being done trying to secure his funding as the school are saying he really needs more one to one help than is currently being provided, but health social and education are arguing about who should be paying for it. The whole situation is very frustrating and time consuming with having to attend meetings etc. I just think if he needs help to enable him to achieve his full potential then it should be given, he has enough hurdles in his way without this being another one.

On a lighter note, we’re having fun during the holidays. We’ve been bowling and to the cinema and park which all the boys have been enjoying. They are now looking forward to Easter and all the eggs they are hoping to get!

As always, thank you so much to everyone who sends the boys post, it is all really appreciated and always puts a smile on their face.

Update 12th March 2011

Charlie’s not had a very good month. He finished his two weeks iv antibiotics and seemed to be a lot better, but he has since has started coughing and becoming quite breathless again. He is being reviewed soon and we will see what they say. We know there have been some changes to the bottom of his right lung so perhaps this is the reason for the way he is at the moment.

He is getting quite frustrated with the way he is feeling and is getting very tired, so all the post he is getting is really cheering him up – thank you.

Olliver is doing well at the moment, but baby Freddie has been in hospital with whooping cough. It is improving, so fingers crossed it won’t be too long before he’s better as he’s been coughing for around two months and it is getting less frequent.

Thanks again for all the post, it has really helped Charlie.

Update 14th February 2011

Charlie’s sats have been quite low so he’s been on oxygen over night and his right lung is a bit quiet so he’s having to work hard during physio to try and shift any gunk that is down there.

He’s still quite cheerful considering everything and thanks to all for the Valentines cards he received!

Update 13th February 2011

Hi everyone and firstly thank you very much for the boys Christmas post – it was lovely, as always, and thank you for the memory boxes they received this week as well.

Things have been pretty hectic here. The good news is Charlie has a baby brother who arrived a couple of months too early on the first of December, but is doing very well. We have called him Freddie and he is home now and very healthy.

The bad news is Charlie has been up and down over the last few months and is now in hospital again for 14 days IV antibiotics for his chest. He has been very tired over the last 2 months with a cough that one minute sounded tight and the next quite chesty, so it was decided he would start IV’s and we will see what, if anything, his cough swab shows hopefully on Monday.

Charlie is taking it all in his stride as he usually does, while we run around like headless chickens trying to sort everything out! Charlie never complains and is so brave, he makes me very proud, as does Olliver, of course.

Olliver has had many coughs and colds over the winter period and also had the vomiting bug on three occasions. He seems quite well at the moment though, apart from a swelling on the bottom of his right foot, so I’m going to speak to Charlie’s consultant on Tuesday as she is also Ollivers and see what she thinks about it.

I will try my best to update soon on how Charlie’s getting on and as always, thank you so much for all the boys post.

Update 26th October 2010

Sorry it’s been so long since I last updated Charlie’s page. Things have been hectic here and my internet connection has been patchy and driving me mad! One day we have it and the next not!

Anyway, Charlie has had a good summer with no additional infections so that has been great and gave us a much needed break. He started school in September and loves it. The school have been so good and have done everything possible to make Charlie’s transition as easy as possible. Before he started, the school applied for funding for him of 5 hours a day to help employ a one to one assistant to cover all of Charlie’s additional needs, but they were only granted 2 hours a week which we all agreed was pretty bad, so we are currently fighting to get the hours increased, but at present we don’t seem to be getting very far. I’m finding the whole situation very frustrating and a lot of added stress that we could do without. I think it is really unfair that children with additional needs have to fight so hard for everything, you would think the powers that be would realise this and make things as easy as possible for them to access all things that other children do.

Charlie has recently had a skin infection around the area of his portacath and has currently got a chest infection. He is on cipro but is due to be reviewed tomorrow. If the doctor feels that his chest is not much better then he will be booked in for iv antibiotics as we want to try and keep him as well as possible and don’t want infections dragging on and then one going into another. He does seem a bit better but his chest still sounds quite mucky to me and he is very productive during physio which he hasn’t really been all summer. Anyway, we’ll wait and see what they say.

Olliver hasn’t been too bad but is having to get used to having daily chest physiotherapy which he is finding difficult. I don’t think his age helps as he just thinks it interferes with him doing whatever he wants to! He has been put on various antibiotics and they are keeping a close watch on his infection burden. If this becomes high they will start him on immunoglobulin replacement therapy sooner rather than later as we don’t want any lung damage etc. He is also being reviewed tomorrow so we will see what they say about him too. His school are not being as helpful as Charlie’s school and when I was at parents evening last week his teacher was unaware that he had any medical issues. I was very angry as just before they broke up for the summer we held a meeting (which amongst others was attended by the head teacher and Olliver’s nurse) and the point of this was to fill the head teacher in on all the issues and ensure that all the information would be passed on to the new teacher to enable Olliver to be supported in the best way possible. His teacher was very apologetic and has said he will find out everything including why he wasn’t told of these issues.

Olliver also is on something called school action plus and should have an individual education plan, none of which have been sorted out either. So I’m not happy at present! I will update soon and let you know what is happening with all these issues.

I wanted to say thank you very much for the post Charlie has received and the birthday cards he had as well. It is all very much appreciated and cheers him up. He has loved the Toy Story post he’s been getting too as he’s Toy Story mad. Both boys got some Halloween goodies from Post Pals as well, so thank you for that too. Sorry again for the irregular updates and I will make sure I update much more regularly.

Again thank you very much for all the post and please know it is all very much appreciated.

Update 21st July 2010

Hi everyone, I wanted to say a massive thank you first of all for all the post Charlie has received, it has been astounding and we are so so grateful for it. Thanks also for all the emails as he’s loved getting those to. Charlie has also had lots of Toy Story related post and he is absolutely mad on Toy Story so he has been in his element. Again, thank you. Charlie received a summer package which was crammed full of lots of exciting items, he especially loved the tomato plant and can’t wait for that to grow. Thank you very much.

Charlie has had quite a good few months. Thank goodness for the better weather as this always brings an improvement to his health. He’s still on the daily cocktail of meds and the plasma infusions but they all seem to be doing the trick in keeping him as healthy as possible. Charlie’s infusion has increased so it now takes around 6 hours to infuse which I’m sure you can imagine is very boring for him, but he manages very well and makes me very very proud.

Charlie will be starting school in September and we have thankfully managed to secure 5 hours one to one funding for him per day, so that will ensure he has continuity of who gives him his physio and meds at school, as well as helping him with his work and making sure he doesn’t get to worn out (which will in turn have a detrimental effect on his health). The worrying news is that there is a child in the class with CF and due to the bugs they will both grow this could prove to be somewhat of a problem. The consultant said thankfully it’s not a situation they come across often but when it does it needs to be handled carefully. The specialist CF nurse from the Royal Brompton will be going into the school to inform them of the importance of keeping the two children separated. Hopefully this will make things as manageable as possible and the school have been fantastic from the start which has been a big bonus.

Olliver has been confirmed as having an immune system which isn’t as it should be, he has been put on daily antibiotics to try and help prevent infections. His immunity appears to be gradually falling so although not as severe as Charlie’s condition, they think he will end up on replacement therapy and this will be decided by his infection burden. He has also been suffering quite a lot with his hypermobility syndrome and inflammatory bowel disorder, so he’s not feeling his best at the moment and unfortunately I seem to be bearing the brunt of it! It must be very frustrating for him as he’s an active boy who just wants to be like his friends. I asked his consultant to speak with him on the importance of taking all his meds as his cooperation in taking them has been poor for a few months – she did and it has appeared to help, so fingers crossed it will continue.

Anyway, I think that’s about it for now. Thanks again for all the post and I’m very sorry we can’t reply to everyone but please know it is very much appreciated.

Update 6th May 2010

Sorry for not updating for a while. Charlie has been keeping much better of late. He’s not had an infection requiring IV antibiotics since December which is such great news for us. He still attends every few weeks for his plasma and bloods etc but all in all has been much better.

He’s got to have more grommets fitted so we are waiting for a date for that as his left ear is causing a few problems because it keeps getting infected causing the drum to burst then fill with yucky stuff. So it’s not nice for him but the good news is his recent one was managed with strong oral antibiotics so we were really pleased about that.

He didn’t get into the primary school which we thought would best meet his needs but was given the second school on the list. Lots of people have advised me to appeal etc but to be honest I am going to go visit the school and meet the head teacher and see what to do from there, as if at all possible I would really like to avoid appealing as things are hectic enough as it is. If the school he has been given cannot meet his needs then of course we will go down the appeal route.

Everything has been going well with Charlie’s port-a-cath and it has helped a lot with his regular bloods and infusions, although his needle phobia is worse than ever. Charlie is having very intensive help from a psychologist and play specialist for this as it really is horrendous to watch. So all in all, Charlie is doing very well.

Olliver has been a different story. He’s still having lots of tests for his immune system and at the moment is neutropenic so is being monitored closely as we still don’t really know what’s going on with him. It seems that his immune system has been slowly declining but as yet we don’t have a name for it. He is on prophylactic antibiotics and various other meds to help, but currently has a heavy cold he can’t seem to shift and it is all really getting him down. He has also been diagnosed as having hyper-mobility syndrome for which he has been having regular physio and pain killers and has been referred to a podiatrist as he needs insoles for his shoes to support his feet and ankles.

Whilst all this has been going on, I’ve been hoping to go back to work part time in September, but really don’t know if this will be possible or realistic. I feel I really need to do something for me and would really like to go back, so fingers crossed it works out.

I think that’s just about all of our news at the moment and I will update more regularly from now on.

I want to say a massive thank you for all the post, gifts, and emails that the boys have received. It has been amazing and they are so grateful – as am I – for the big smiles it puts on their faces. I think it’s lovely that people do this for them, so again, thank you to every single person who has sent or emailed something.

Update 19th January 2010

Happy new year to everyone and hope everyone had a nice Christmas.

Charlie had his port-a-cath fitted without too many problems. He ended up staying in for a week for two different i.v antibiotics as he has a rattly chest and an ear infection. His ear was full of muck and a little bit of blood. He got over it well and we came home Christmas week ready to prepare for the festivities!

One of the antibiotics he was given whilst in surgery should have been given as an infusion over an hour, but instead it was mistakenly pushed through his cannula, so that caused a bit of worry as he then had to have a lot of i.v fluids to dilute it, but luckily he was fine. It’s quite a potent antibiotic and can cause deafness and kidney problems in some children if not given correctly, but as I say, he was fine. He also had his first plasma infusion through his new port and it all went very well although it had been accessed during surgery so he didn’t actually know he had to have a needle in it. When we went for his infusion on the 5th of January he had an absolute melt down when he saw the needle they had to put in, he couldn’t understand why he still had to have needles when he had his ‘button’ as he calls it. Once it was finally accessed and he saw it was nothing like having a cannula fitted, the look on his face was great. He was so relieved and couldn’t believe how easy it was and so was I because the last few months have been terrible when it came to getting cannulas fitted.

We had some bad news about Olliver – he had some tests on his immune system due to various issues. Whilst Charlie was in hospital, the immunologist came to see me and she told me that Olliver’s immune system is like Charlie’s and not functioning correctly and his bone marrow isn’t working as it should. I was quite shocked, as although my instincts told me something wasn’t right with him, it’s another thing to have it confirmed. We’re not exactly sure yet what type of immune disorder he has and they’re not even sure if it is the same as Charlie’s, because at the time we were still waiting for more blood results, so we have an appointment on the 10th February to see what the next step is. I told Olliver and he was very upset as he has seen everything Charlie goes through and being much older means he understands much more than Charlie does. I think I reassured him in as much as at least he has an answer now as to why he has the problems he has with his joints stomach etc and that we don’t yet know what treatment he’ll need. The doctor told me it may be possible to try him on long term antibiotics and see how that works for him before escalating to plasma etc. He is feeling a bit down in the dumps at the moment and I’m sure he would be very grateful for a few smiles if anyone could spare the time. He’s a very private boy so it’s hard to know what he’s thinking sometimes.

I wanted to say thank you very much for all the presents, cards, and letters that the boys got over Christmas and also for Olliver’s birthday. They really loved them all. Charlie opened some whilst he was in hospital and they really cheered him up and Ollie opened some after his news and that really helped too. It really does make them smile and Olliver (being a bit older) thinks it is so kind of people that they don’t even know to do that for them, as do I. So again, thank you very very much. Amongst other things, Charlie was sent a Wall-e laptop and hasn’t been off it since – there was no note or anything with it so whoever sent it, thank you very much! Thank you also to all our regulars!! The only thing is, Charlie thinks all post is his now!!

Update 4th December 2009

Things have been quite hectic here as Charlie has been growing some nasty bugs in his lungs again, namely staph and cepecia, and he was quite poorly with them. I am currently waiting on cough swab results taken on Tuesday to see if anything else is going on down there as he has been coughing a lot again.

Both boys have had there normal and swine flu jabs and were fine with it, other than Olliver having a slightly sore arm. We don’t know how successful Charlie’s will be as he doesn’t produce antibody responses, but even a tiny bit of protection is better than none.

Charlie’s going in on the 14th of this month to have his port-a-cath fitted so please keep your fingers crossed that goes well with no infections etc. He will also be having some i.v antibiotics through it.
Thanks to everyone who has sent the boys post as they really love it. I will send a proper update soon but he has a sore ear at present and just wants to sit with me. I will let you know how everything goes with the port etc and thanks again to everyone who takes the time to send the boys mail.

Update 21st October 2009

Charlie came out of hospital again yesterday as he had to go in due to another chest infection which hadn’t properly cleared up from the last one three weeks ago. He’s also been growing nasty bugs on cough swabs so isn’t really having a very good time at the moment. We have decided that he is to have a port-a-cath fitted as he’s had so many lines put in his veins are now very bad.

I want to say thanks to everyone for Charlie’s birthday cards and presents as he loved them all. Also, thank you for the parcels both boys received with all the books, sweets, and crafty things in. They we’re so chuffed with them.

Update 1st October 2009

Charlie hasn’t been too bad lately although he has just finished some i.v. antibiotics for a chest infection and bug he was growing. He also keeps getting reduced air entry in his left lung so is currently having to have physio three times a day to help prevent this.

He went back to school in September and didn’t cope too well as all his friends have moved up, but as he’s been kept back a year it threw him as he didn’t really know anyone. He’s getting on well now though and is getting used to all the changes slowly. He now has an IEP at school so he’s working toward the goals on that and we’re busy trying to get all the evidence together to support his need for a statement. Charlie also has 5 hours one 2 one support at school to help him with his targets etc but we are hoping for more once his statement has been sorted.

He is also going to be taking melatonin to help with his sleeping habits, he’s a very disturbed sleeper and this in turn affects his behaviour so we’re hoping these help.

Olliver has not been too well lately and is currently waiting for an endoscopy. He’s always had a lot of stomach trouble and is already on medication but his consultant thinks there is something else going on, possibly some kind of inflammatory disorder and juvenile arthritis has also been mentioned, and they also think that this could be related to his stomach. He’s currently taking co-codamol every six hours which concerns me slightly but this is the only thing that seems to help the pain a little and his consultant has prescribed these so i guess it must be ok. The sooner the endoscopy gets done and they sort him out the better as he’s had a bad year health wise this year too.

Thank you to everyone who has sent the boys post as they love it. Charlie’s had post from Cuba, Spain and America, so thank you very much for that and for all the other cards letters emails and pictures. They really are very much appreciated and do put a big smile on their faces.

Update 8th July 2009

Good news to report! Charlie has been infection free and out of hospital (other than going for the usual plasma and appointments) for six weeks. That is very good news. He has been doing well lately.
We’ve just got back from a break in a Haven Park and we’ve all had a really lovely time. Even Olliver seemed to relax and enjoy himself and Charlie and him got on really well – he was very patient with Charlie and they even shared the same room. Charlie wanted to sleep in Olliver’s room tonight, but things were soon back to normal and the arguing had begun after about half an hour of being home!
Charlie is still having the many assessments relating to his development, education and behaviour etc. I never realised it was such a long and drawn out process, but hopefully at the end we’ll have the right diagnosis and help for him. His IEP’S are already in place and his school have been great. He will be having a statement of special educational needs so they are busy gathering all the evidence for that, as it is obvious he works much better on a one to one level. This is because his concentration is much better like this, as opposed to in a large group where you never get his attention in the first place, never mind sustain it.

More good news is that we have been given 15 hours a month respite care for Charlie. This will enable me to spend some quality time with Ollie and catch up on bits that need to be done. I can also have a rest as Charlie can be very hard work sometimes. I wouldn’t change him for anything though!

I wanted to say thank you to everyone who has sent the boys things this month as they were really chuffed. I keep meaning to write down everything they get to say thank you to everyone but I never quite get round to it. Please know though that we really appreciate it and they are so grateful for everything they receive. Also, thank you for the kind letters that I’ve received as well; they have really helped lately as everything has seemed a real struggle, so thank you very much. Once again, thank you very much for all the letters, cards, emails and gifts we have received.

Update 3rd June 2009

Things have been pretty hectic the last few months. We’ve had so many assesments, appointments, and reviews, that my head has been spinning with all the information i’ve been getting!

Charlie’s had a couple more hospital admissions for infections where he’s been in for 4 days or so for i.v antibiotics as is his protocol, but touch wood he’s got over it all well. He was also at the Royal Brompton a few weeks ago where they reviewed his recent CT scan etc and they have increased his chest physio to 3 times a day as they said there is much more muccas lying down there now and if it’s not shiffted then obviously it can lead to infection. He’s going to be trying a new device with his physio alled a PEP mask. I’m not really sure what it is but i think the idea is it keeps the airways open longer so it is easier for him to cough up the sputem. It will also allow him to be slightly independent from me and is something new to try and encourage him. It will also be portable so we can take it where ever we go and then if we’re out for the day he can use that and i’d do the hands on physio later when we got home.

We’ve also discovered that Charlie has a delay of around 18 months to 2 years with his learning and some of his understanding. It came as quite a shock as i really didn’t think he was that delayed at all. I’ve been told though that with the right help and support he will easily reach his full potential. We are still waiting for a diagnoses of his behaviour etc and it seems to be really dragging on. ADHD, autism, and global delay, have all been mentioned but we have got nothing in concrete yet. I’m keen to hurry it along as i think once we know exactly what we’re dealing with it can be managed in the right way so that charlie is getting the help and support he needs. He was going to be at school in September but we’ve all decided it’s best for him to stay at pre school for another year whilst everything is being sorted out and all the evidence is being gathered for a statement, so that come September 2010 everything will be ready for him to start.

Olliver’s been having a hard time lately trying to deal with everything that has been going on and deal with Charlie etc so i’m hopeful that Charlie’s respite care will be sorted soon so that i can spend some one to one time with Ollie, which i really think we need. He deals with everything so well and i’m so proud of him, but i do feel he misses out sometimes as unfortanatly Charlie’s illness, behaviour etc, all have to be the main focus most of the time. It makes me feel so guilty but it’s just the way things are at the momment.

One of Charlie’s inhalers has been changed and it seems to be helping with his breathlessness so thats good. Also, he keeps getting reduced air entry in his lungs so that is the reason his physio has been increased to hopefully help prevent the blockages in his lungs that the thick mucas is causing. We had an assessment from Social Services disabled children’s team and they have advised 14 hours a month respite and 5 hours a week domestic help, but it has been passed to the complex care team panel and they hold the purse strings, so we’ll see what happens. His social worker is hopeful, so fingers crossed.
Things seem to be going smoother with his infusions now. He dosen’t seem to be vomiting every time he has the plasma now so that’s a step forward. We had quite a scare a few weeks ago as he went to school in the morning and he was fine, but then i had a phone call asking if i could go and collect him as he was crying a lot and saying he was sad. When i arrived he looked terrible, he was a grey colour, his eyes were rolling and he was vomiting, but trying to sleep as well. They were just about to phone an ambulance when i arrived. I asked to take him home and see how he went which thinking now was stupid. Anyway i got him home and he was just terrible. He was absolutely exhausted and floppy so we got him to hospital and they put a cannula in etc and it turned out he’d got another infection. His blood sugar was low and when he was vomiting violently he was unable to get enough air in his lungs, combined with the problems he already had it all made him pass out. That’s Charlie though – he never does anything by halves, bless him!

He seems well at the moment so i’m hoping it will last a while as we’re going to a Haven site at the end of June for a well deserved break for us all. Both boys are so excited as they absolutely love Haven and Charlie thinks the caravans we stay in are actually his. He’s always asking to go to his caravan!

I just wanted to say thank you for all the cards and gifts Charlie has had lately. You wouldnt believe how much they cheer him up. Thank you for the books both boys were sent and Charlie also received a parcel from a grandma in Spain, so thank you so much for that – he loved it as it was full of his favourite things. They’ve also had postcards and lovely hand made cards, so thank you to absolutely everyone who has sent them things, it is very much appreciated. I have also received some lovely letters, it is so kind of people to go out of their way and do that. It’s one thing to do it for the kids but it was so nice for me to think these people are actually thinking about all of us. So, once again, thank you very much.

Update 31st March 2009

Charlie hasn’t had a great month as he has been in hospital again with another chest infection and was again put on iv antibiotics. He had an appointment with his immunologist and they have decided to increase the immunoglobulin infusions to see if this helps as he seems to be developing an infection the week before an infusion is due.

We have had lots of meetings regarding Charlie and his problems and we finally seem to be getting some help with things. We have a social worker from the disabled children’s team coming to visit us and talk about respite care and we have lots of support from Charlie’s consultant community nurse, so fingers crossed it will be a simple process.

We are also waiting for an appointment with another doctor for Charlie’s behaviour and hopefully some help with that.

Thank you very much for the Mother’s Day wish i received this month. It was very kind and cheered me up, especially as we were in hospital for Mother’s Day due to Charlie’s infection.

Update 15th March 2009

Charlie’s not had too bad a month. He had his tonsils out in February and all seemed to be going well, until a week later when he got a nasty infection. He was admitted back into hospital and put on two different i.v antibiotics for three days which seemed to do the trick. He then had his plasma infusion a week later where they checked his throat again and said it wasn’t healing as quickly as normal, but it wasn’t totally unexpected as he does have an immune deficiency and his body obviously doesn’t heal as quickly.

Charlie’s behaviour has again gone down hill. We have an appointment with the community paed coming up as his consultant and school think it is very likely he has ADHD and that the sooner we can get some help with it the better.

He is also being assessed for respite care at the request of his consultant as well, who says he does qualify, so we are waiting to see what the social worker from the disabled children’s team. I would be a bit nervous about him having respite but think it will do Olliver and i good in the long run, as it will enable me to spend more time with him as i think he has been feeling left out lately.

Charlie is also going to be having much more support at pre school now and has been put on an individual education plan amongst other things, so fingers crossed all the support he is getting will help him.

Thanks again to everyone who sends post as the boys love it. Thank you to every one who sent the boys Valentines cards too, they were all very much appreciated.

Update 2nd February 2009

Happy New Year to everyone and sorry for the delay in the update, things have been quite hectic.

Charlie finally started his plasma infusions just before Christmas. We got there for his first infusion at the beginning of December and whilst i was talking with his consultant and signing the consent forms etc Charlie was having his observations etc done by the nurses. He had a high temperature which i initially thought was just due to the fact he’d been running around playing, but within a short time he became quite unwell with a rising temperature and was very dehydrated. This really surprised me as when we left home, apart from being a bit tired, he seemed fine and certainly didn’t seem dehydrated as he was eating and drinking normally. They put a cannula in for fluids then sent him down for a chest x-ray which showed another infection at the base of the left lung. He was started on gentamycin and cefuroxine I.V antibiotics and continued to look unwell with a temperature for a good few days, after which he seemed to improve nicely and we were home in about a week. So his plasma infusion was rebooked for 2 weeks later. He had this one fine without any hitches and not too many side effects, so that was all good. He then had his longest run of good health in 3 years and didn’t have another infection until last week when he got tonsillitis and a urine infection. He was treated with strong antibiotics for 10 days and improved nicely which i was thrilled about. He has had a few episodes of sickness and stomach upsets but we have been able to deal with these at home and he has got better quickly.

Unfortunately, his brother had pneumonia all over Christmas and was quite poorly. Olliver has lung damage caused through his lungs collapsing when he was a baby and he also has a blocked valve in his heart. These haven’t caused any problems for around 2 years, although he still takes all his meds etc. Anyway, this pneumonia has exacerbated it all and he is still not back at school. He is a lot better though and hopefully will be back at school tomorrow depending on the snow!

Charlie is due to have his tonsils out and grommets put in on Thursday, but due to his illness has to have 24 hours I.V antibiotics before hand and obviously cannot go in as a day case. That is the usual practice here but there doesn’t seem to be much communication between St Mary’s hospital and our local one where he has shared care, so I’m waiting for them to call me today and let me know what’s happening.

The other thing that’s happened is that Charlie is being assessed for a statement of special educational needs. His behaviour has become hard work and he has had a lot of time off due to all the illnesses he’s had. When I took him to nursery on Thursday she said she has informed SENCO and with my agreement they will come and assess him. She thinks he needs one to one whilst in school and that this will make things easier for them and him. So fingers crossed he will get the funding for this. I have spoken to his consultant about it and she thinks it’s a good idea. She also said a lot of names will get mentioned like autism and ADHD but to just wait and see what his final diagnosis with regards to that is. She said she can’t stop me worrying but I should see it as a good thing as there are a lot of children who need help but who can’t get it.

We have quite a busy month coming up with more infusions, his operation, assessments, and half term, so we’ll see how that all goes. Now I think it’s about time we go and build a snowman and enjoy the snow for a while!

I just want to say a massive thank you to everyone who sent the boys post, presents and everything else over Christmas, it was so much appreciated and they loved every single thing they received. Thank you very much to all the elves and reindeers, it means a lot and the smiles are priceless. Thank you also to Kate Dee who always sends the boys something and to Wendy as well. Thank you very much. As Olliver says, ‘Post Pals is way cool!!’

Update 30th November 2008

Charlie has had an up and down month, he was only back at pre school a week after being off for a month and then he became unwell again and is growing another bug in his chest (moraxella catarhalis) so has not been back since, although we are hoping he can go back tomorrow.

Things have been very confused with Charlie starting his immunoglobulin infusions as Great Ormand Street wanted to wait until February to start them but because of all the infections he has had and the state of his lungs from his most current x ray, St Mary’s are not prepared to wait and are starting them next week for definite. St Mary’s have told us that he has combined immune deficiency and they have increased his current prophylactic antibiotic and put him on another stronger one to try and build him up a bit before his first infusion. They have told us the first couple are not going to make him feel too well, as they draw out all the bugs and infection that is lurking around his body so that the antibodies he is having can fight them off, where as at the moment his body is unable to fight infection properly due to his lowered immunity. I have been told to keep him away as much as possible from people who are ill and have coughs and colds etc and also chicken pox as they can have nasty complications for him.

So we had a tour around the ward and met the nurses and his new immunologist who were all really nice. There will be a lot to do on his first infusion next week as we are going to be having a new protocol drawn up and  and i also need copies for his local community nurses and hospital. The doctors at St Mary’s also think it is possible he has some small areas of collapse in his lungs, but they will not be repeating his CT scan until they have got him as healthy as he is going to get, so that they can see the true damage to his lungs. He has been very breathless lately and has been unable to run around and do the things he normally does. He has found this very frustrating and it has made him very upset and angry and he has been lashing out a lot, although when he feels unwell his behaviour does change for the worse understandably.

Thanks again for the post he has received as it cheers him up no end. This month he has had a couple of cards and a lovely Bob the Builder annual from Kate. Thank you also Kate for the letter and stickers for Olliver, he really liked them.

If possible please keep us in your thoughts this month and hope that the first infusion goes smoothly and he doesn’t feel too ill with it. He will have them every three weeks and so his next one is scheduled for the Monday before Christmas. It would be nice for him to really enjoy Christmas as he has put up with much more than any child should this year.

Much love to all the other Post Pals families and wishing you all a happy Christmas.

Update 1st November 2008

Charlie has had another bad month and has ended up in hospital with a severe chest infection. He had to have IV antibiotics and was on oxygen and at one point needed seven nebuliser treatments one after the other then every hour thereafter. He is now confirmed to have a primary immune deficiency and will start immunoglobulin replacement therapy this month at G.O.S.H. We are hoping that this makes a big difference to Charlie as he has now got some lung damage which includes shadows and enlarged lymph glands in his left lung by his heart. He is still very wheezy and needs 10 puffs of ventolin inhaler every three hours. He was unwell yesterday and we found out he has red enlarged tonsils and an infection in both ears, with one of his ear drums bursting due to the pressure, so he is in pain from that as well.

At the moment we are feeling very sorry for Charlie and he is feeling sorry for himself. He is very tearful and clingy but the post he has been getting is really cheering him up. Olliver has also had some post this month as well so that has cheered him up, as i think he feels pushed out at times due to all the care etc that Charlie needs. He also had to miss out on a friend’s birthday party that he was looking forward to because Charlie was in hospital and although it can’t be helped, it is still disappointing for him.

Charlie has a few appointments this month, three of which are only a few days apart so we’re in for another busy month.

Thanks again for all the kind post, it really does make such a difference, especially when the going gets tough. It’s really nice to think that other people are thinking of you, so thanks again. Thank you to everyone who sent Charlie a birthday card or present, he loved it all, especially the pop party CD which he asks to have on all the time! Thank you to Post Pals for the Halloween posty as both boys really loved it and Olliver was really pleased to get some post.

Update 11th October 2008

Charlie’s not doing to well at the moment, he has a right sided lung infection and he is to start plasma infusions at Great Ormand Street to try and improve his immune system. We are not sure when this will start though as it was only decided on Thursday.

Update 29th September 2008

Charlie hasn’t had a great month. He was in hospital again suffering from another chest infection so has been on different antibiotics called cipro and prednisilone steroids. He had a couple of cough swabs taken which didn’t really show anything up apart from a heavy growth of candida in his mouth, due to all the medication he takes. He has been off his food and drink so got slightly dehydrated which meant he needed to take a special drink with extra salt and things in.

Just before he was diagnosed with another infection, his behaviour at pre school really changed. He started to become very aggressive and was crying a lot which is very unlike him and even his play leader said that. It has now improved and gone back to normal so we think it must have been because he felt poorly, which is a relief. He still has a bit of a wet cough but nothing like it was and he is much less tired now so he is definitely getting better. He has another week of cipro then back onto his normal prophylactic antibiotic augmentin. He went back to pre school today and loved it – he gave out his birthday party invites, so was very proud of himself for that! He has a busy October ahead as he is due to be seen at St. Mary’s hospital on the 9th, then the 10th is his birthday, on the 11th he and his brother have their flu jabs and on the 12th it is his birthday party! Fingers crossed he carries on improving and gets over this infection and has a long break before the next one!

Thank you very much to everyone who has sent post to Charlie, it really brightens him up. Also, thank you very much to Post Pals for the Thorpe Park tickets, we are hoping to go next week and have lots of fun. Thank you to Helen for the bob book; hope your wrist is better. To Maddy and Holly for the cards and for the Buzz Lightyear book and the sweets for Oliver – they loved them thank you.

Update 30th August 2008

Charlie was at clinic a few weeks ago and unfortunately has been referred to another London hospital as he is having a few problems with his immune system despite all the treatment he is on, so they now need to find out if there is a separate problem relating to this, or if it’s all to do with the one illness. We should hear from them soon.

He seems quite well at the moment, although the last couple of days he has been sneezing and coughing a bit, but fingers crossed it won’t come to much. We have been advised he should have his tonsils out, his nose cauterized, and grommets put in, so we have a lot of hospital visits coming up but as yet have no dates for anything.

Fingers crossed for a good month health wise in September and thanks again for all the cards letters and gifts people have sent Charlie. They are all very much appreciated and he loves receiving it – he gets so excited every time he hears the postman.

Story written 2010

Brooklyn was born on the 21st of September 2007 at just 24 weeks old and weighing 970 grams. Through his extreme prematurity he suffered respiratory distress syndrome, group strep b, high infection risk, jaundice, anaemia, chronic lung disease with Bronchopulmonary dysplasia. The paediatric team that delivered Brooklyn gave him just 20% chance of survival.

Once the team had stabilised Brooklyn he was transferred from Lister Stevenage to Luton and Dunstable Hospital but still inside the plastic bag he had been put directly into at birth.

On the 24th of October 2007, due to worsening respiratory failure whilst being ventilated, a CXR was done which showed changes consistent with chronic lung disease and patchy atelectasis, which is a collapse of the lung tissue. The diagnosis for Brooklyn was that he had a PDA with left heart ventricular over load.

Brooklyn spent his first Christmas in the NICU, eventually coming home at the end of January 2008 on oxygen. Brooklyn is now aged 2 and has Cerebral Palsy – mixed ‘athetoid hypertonia’. He cannot and will not ever be able to walk or sit. He has severe stiffness of the lower motor system followed by a floppiness.

Sadly Brooklyn’s chronic lung disease still remains and he travels frequently to hospital by ambulance when his breathing deteriorates.

Brooklyn has autistic tendencies too, which causes him to have many frustrations.

Please take a look at Brooklyn’s CarePage to read more about him.

Update February 2014

Brooklyn is moving on from Post Pals. Thank you to everyone who has supported him and his sisters over the years. We wish Brooklyn and his family all the best for the future.

Update 29th September 2013

Brooklyn is still on his life support machine but they have had to now run it through the nose and not through the mouth as it is more comfortable in the long run for children who are not going to come off them yet. He has gone back onto the paralysis meds and so has no awareness that anyone is there at all so I’m going to get some sleep I hope until tomorrow. Please pray everyone and the chaplain is going to visit him tomorrow too.

Update 25th September 2013

Brooklyn is very poorly. He has been rushed into hospital and is fully ventilated and unable to breathe on his own.

Update 14th August 2013

Brooklyn is well at this present moment in time, although he is still up and down respiratory wise. His latest admission to hospital was last week where he desaturated to 85 on air and kept me quite on my toes! As everyone who reads his updates will know, he is quite unsociable with his breathing and for some reason seems to think it’s ok not to take in oxygen. However, we love him regardless and keep fighting for him.

We have been told that any forthcoming operations are not advised as the anaesthetic is sure not to agree with him and we could find ourselves without our little boy, so we are caught between a rock and a hard place between what he needs and what he can actually have. We are all keeping strong for him and using the summer holidays to attempt small adventures to places that he will perhaps relate to and enjoy.

Update 19th May 2013

Just a quick update. Brooklyn will be back in hospital on the 3rd of June for an operation as his sleep apneas have become worse and his saturations are really poor at night. He is still smiling though and as a family we try to keep normality going, although I’m personally shattered, as I’m sure all you mums can relate to. I shall let all know know what happens after the operation.

Update 15th April 2013

Over the past month Brooklyn has been quite up and down. We have not really known what each day will hold but hoping for the best each time.

Brooklyn has had several hospital admissions due to respiratory distress (the ambulance crew are getting to know him very well). It was decided by an ENT consultant that Brooklyn may benefit from having his adenoids and tonsils out which was due to happen today (15th April) but sadly the consultant anesthetist doesn’t think he is stable and strong enough with his lungs to be able to undergo the anesthetic, so we are going to re-schedule in 6 weeks and see if that will make any difference for us.

I would also like to thank the people that sent Brooklyn, Lisa and Amy, an Easter egg. It was very kind and thoughtful.

Update 30th December 2012

Firstly, I would like to say a big thank you to all the people that follow my beautiful Brooklyn and who have sent lovely Christmas cards, and to all the hard work the reindeers have put into writing to us this month and sending gifts which have been placed under the tree.

Over the last months we have had some worrying times with Brooklyn. He has been in and out of hospital and been keeping us on our toes. Breathing has not been his greatest asset of late and the paradoxal movement of his vocal chords doesn’t allow for him to saturate well. The staff in the resuscitation areas have been great and there is always a lovely team trying to keep Brooklyn as calm as possible. With the latest bout of illness, Brooklyn’s breathing has become quite bad and a very close eye is being kept at all times. His sisters have been amazing and as always are on tap to help out. He has been saturating at 85 and so we have been told he will need to be operated on (I will keep you up to date on this).

Brooklyn has had some great days though too and has finally learnt to say ‘mummy’ and his sisters names! He is able to communicate a lot better with us and make his needs much clearer.

Lisa is 14 and looking forward to turning 15 in January. She is currently working her way through her mock exams whilst being a brilliant helper to Brooklyn and myself allowing me times to rest up when needed. She still loves to dance and has recently become very interested in baking cakes and other bits. Santa is going to being her a cake pop maker.

Amy is now 13 and acts like a second mum to Brooklyn. Since December she has become actively involved at the yard and has taken on the responsibility of looking after our horse as I cannot at the moment. She rides 3 times a week and would love to become some form of vet physio when she’s older. Amy has one passion only now with pure tunnel vision and that is for horses. She came first in the last dressage competition which was a wonderful achievement for all her hard work. She helps to care for Brooklyn and every morning she shares the duty of getting Brooklyn dressed with her sister and then makes me a tea before school. She really is wonderful.

We all pray that our wonderful little fighter remains as he is and constantly proving people wrong. He made it to five in September and that was a day in itself to rejoice. Everyday is a miracle and to be thankful for.

Wishing all the Pals and everyone involved, a very merry Christmas and God bless all.

Update 16th November 2011

Brooklyn has suffered on and off quite badly since January. As you know, in January he caught Pneumonia, which to be honest has left its scar and made him so much weaker. He does however carry a smile most days and brings a massive amount of joy to us a family. We are still holding out that one day we will be told he will make an anaesthetic and then we can yet again consider the stem cell treatment.

For now, Brooklyn is back again under the ENT care, neurologists and has just received his first treatment of botox to his legs. He was cast on Monday and hasn’t really had any sleep due to being in pain every minute of the day. He exhausts himself by the evening and then by around midnight he is able to grab a small amount of sleep before the pain wakes him again. His sisters, Lisa and Amy, have been amazing and they help me everyday and without them I really don’t know how I would cope or get through the days.

Brooklyn has learnt to count to 10 and loves nursery rhymes and number counting now. He shows a real passion when counting rhymes are played or sung to him. He still loves to watch his DVDs and in fact he is at his happiest when he receives a new DVD. He calls them “D”.

Everyday is a blessing for us and I hope to one day write an update that fills me with joy rather than the sadness I feel when I update. Brooklyn is a positive fighter of a little boy and I ask everyday people keep him in their hearts.

Thank you for all our post.

Update 7th July 2011

Dear all past readers and new. Firstly I must apologise for the lack in updates but things have been a little rocky, although there have been good days too.

The last update talked about the pneumonia Brooklyn suffered in January. Since then he has been up and down. We have been waiting for a placement at a specialist hospital so that Brooklyn’s legs can be looked at but so much time is passing so very quickly. Lisa and Amy are my rocks and without sisters like he has I don’t know how I would manage.

Brooklyn seems to have at most a fortnight of happiness and activities that distract him from his everyday pain, but then the slightest illness seems to drag him down. Just a few weeks ago I took Brooklyn and the girls to the farm for some fun – they had a wonderful day full of laughter but it was so short lived. I honestly thought that it was time we interacted with friends and pets again seeing as the simple things like watching the dogs in the park and our cats run around make him laugh so very much. His breathing started to deteriorate and his skin started to swell and bleed. I tried everything to help him but by the time the paramedics arrived Brooklyn was unconscious. I cried so much, I couldn’t believe he was being offered his angel wings yet again! Not now! I sat at his bedside while the doctors did their bit and miraculously kept him alive. We never know if he will stay in this world or if he will attach his wings and leave.

Update 29th January 2011

Once again I find myself apologising for the late updates, but it had been very hard for us over the past few months. I don’t really know what to write to be honest as I look at Brooklyn sleeping peacefully and want to tell you all that everything is ok but we have had laughs and tears of late.

Christmas was lovely and Brooklyn received some lovely cards and prezzies. The reindeers were very good with their letters and he listened as I read every one to him. He enjoyed opening his post so much; it was great and kept him occupied at times of difficulty.

The week before Christmas I took the plunge and took Brooklyn to Italy for his baptism. The plane journey was really frightening for us as he had to be on a high flow of oxygen for the entire journey to make it. The ceremony was beautiful though and gave me a sense of peace.

Without going into all the details, we have just spent 11 days in hospital as Brooklyn caught pneumonia which almost took him from us. The illness has sadly exacerbated his CP and now he has no use of his legs to be able to straighten them or his arm. The spasms are pushing his hip out if its socket too. He has been dosed up on morphine for the pain and we are waiting now to go to a London hospital to see the surgeons there. It’s a little confusing as the brain damage shouldn’t really have let this happen.

I will update again but it’s very sad and difficult for us all. His sisters have been great and their friends have all offered to help and put them up to help out.

Update 23rd November 2010

Firstly I would just like to say thank you for the cards and letters we received last month as they were most thoughtful, as always.

Brooklyn is currently in hospital, we are now on week two. It has been 6 weeks since Brooklyn last ate any food and the doctors are trying to work out what could be wrong. He is breaking out into sweats in the night and this morning his pyjama top and vest and the bed sheet had a huge amount of mould growing onto it, as you can imagine this has caused huge concern (this is how much he sweats just over night). We go through one pair of Pyjamas per night.

Brooklyn is now having his bloods and urine tested for salts. Hopefully he will soon have a full assessment as his sats are not stable either, as he is suffering respiratory distress. He is still smiling though and I will update as and when I can.

Update 17th November 2010

Brooklyn is currently in hospital and it has been 6 weeks since he last ate. The doctors do not know what’s wrong but sadly the weight is dropping off him. He has Hugo Mouse as company from Sarah.

His sisters Lisa and Amy are being so good and supportive. Please all keep him in your thoughts.

Update 23rd September 2010

Thank you to the very kind people that sent Brooklyn a birthday card. He had a lovely birthday at home with us all and we decorated the dining room with lots of Toy Story bits. We bought him the pink talking cuddly bear from Toy Story 3 and he loves it. It goes everywhere with him.

Update 12th September 2010

I would like to say thank you again for all the kind cards Brooklyn has received this month and the lovely thoughtful letters. Some of you have put your address on the back and I would normally reply to you but have been rushed off my feet.

Amy has started secondary school and is having a great time. Lisa is glad to be back with her friends.

Brooklyn is in hospital at the moment with respiratory distress so I am not getting much sleep. He has formed a bond with Buzz from Toy Story and has a Buzz Lightyear in his bed to keep him company. I will keep updating as and when I can.

Update 8th August 2010

Firstly I would like to apologise for the delay in Brooklyn’s update but every time I think I have 5 minutes to sit down and write something happens!

I would like to thank all who have taken the time to email, write, and send little gifts in the post. It is true to say Post Pals is a wonderful thing. Brooklyn recognises now when a package is put in front of him that there is a little goody inside and he can’t wait to dig in! He loves listening as I read his cards so please don’t stop sending him letters.

I would like to flood this page with good news and yes Brooklyn has had some really good days where he has been so happy. He recently received his TomCat tiger trike which is amazing as it gives him a chance to be pushed around the garden and even have short trips out. Because of the design, as he is being pushed around it gives him quite intense physio to his legs which are sadly still cramping up quite severely.

We tried to get Brooklyn in again for stem cell treatment but received a letter saying NO! He cannot travel by plane due to the oxygen change and is still not strong enough to undergo a general anaesthetic as he will not wake up if he does.

As a family we still persevere everyday. Brooklyn has lost a lot of his memory at the moment, so whereas before he was talking slightly saying mum dad and animals, he cannot remember any of this now.

At this precise moment Brooklyn is quite poorly as he has caught a chill to his chest which means for him that his airways have tightened up, and the paradoxal movement of his vocal chords make it difficult for him to breathe. We’re trying to keep him out of hospital, so fingers crossed. I will update again as soon as I can.

Update 14th May 2010

Firstly I would just like to say that everyone who left me a contact address should have received a heartfelt thank you from Brooklyn. Your post and kind words meant not only a lot to us as a family, but also to little Brooklyn, who I have to say had so much fun opening his cards.

I don’t really know where to start on Brooklyn’s update as he has been so up and down. I think I have good news and then it all comes crashing down around us again.

Brooklyn’s health has been very unpredictable. He started the month quite positively and with lots of beans inside him and full of smiles. As a family we have been trying to keep our chin up and stay positive as we know that Brooklyn can become ill at the drop of a hat.

Brooklyn has started treatment at a centre called the CPPC which I was hoping would provide the miracle answer for him with regards to strengthening him up and giving him a better chance of a normal life with regards to his sitting and possibly walking. Sadly at the moment this does not seem to be the case. They are really trying their best but it is like we are just fighting the demon at the moment.

Brooklyn has mixed CP so although the treatment is good to keep him stretched, every time they try to straighten his body and weight bear, he just collapses from his weight. I was told last Friday that the outcome for him does not look good as we can’t fight the stiffness against the floppy side of him. Brooklyn is such a happy boy it just doesn’t seem fair.

He has had quite a few episodes of respiratory distress lately due to the change in the weather and will be going to hospital later today as his paradoxal movement of the vocal chords are making the oxygen intake extremely difficult. He is also running a temperature and has been unable to gain any proper sleep at the moment so we don’t really have a choice but to take him in, AGAIN! Sadly, with the amount of medication Brooklyn is on, if we are unable to keep him stable at home, we have to let him go. It is always so scary as Brooklyn is so unsociable when it comes to breathing and we end up being on tender hooks each and every time, as we always seem to receive bad news.

We have also just received in writing now that the stem cell treatment on Brooklyn’s brain cannot go ahead at the moment as Brooklyn is not strong enough to undergo a general anaesthetic and will not be able to wake. He also cannot travel to the clinic either as he would not be able to make the plane journey due to the change in the air pressure. We are all so sad as we don’t know what will happen next.

My little boy is my life and always will be. I hope everyone who reads this keeps a smile for him. Keep your post coming as it really has made a difference to know that people do care.

Update 20th April 2010

Today Brooklyn went to the CPPC in Luton and it was amazing. They are a specialist centre dedicated to Cerebral Palsy.

Brooklyn had the right hump while we were there and so having an assessment was not as easy as I hoped. When we got there they offered us a cup of tea which both Chris and I could have bitten their arm for as it is not often we get a cuppa made for us and actually get to drink it while it is still hot!

They then took Brooklyn into a treatment room which looked amazing. The physiotherapist looked so confident and it was obvious that she knew exactly what she was doing and was extremely good at her job! The Director and founder of the CPPC also stayed throughout the assessment and answered a multitude of questions. Agnes, the lovely Physiotherapist, first took Brooklyn over to the therapy table and tried to manipulate the muscles in his legs but he screamed so loudly and tears just started to pour.

The extent to which his legs scissor became apparent to me for the first time, as I have never seen him worked in this manner. Sitting was also tried and the fetal positioning with all his weight being on the backs of his calves. He has no safety movement or control in his arms either which is a problem. I wanted to cry when I realized just how bad things are – it was as if I could see how Brooklyn’s whole body would end up if action isn’t taken now.

Life is hard enough for Brooklyn but watching the pain and the tears and the severity of his handicap has broken my heart yet again.

They discovered some rounding in his spine and also pointed out that he has quadriplegic CP (which is all four limbs).

His involuntary movements are what cause him so many problems, and the fact that his brain has been damaged means that the movement that he does have is totally uncoordinated as the brain cannot differ between movements.

His hips are displaced and work almost like a ball bearing does but cannot hold the core of his body in place. We were told at the start of all this by our local doctors that if Brooklyn had not sat on his own by the age of 2 he would never sit or walk. So far this has all run true.

At the end of his assessment we all sat down and had a good chat about what Brooklyn would need if finances basically could make the stretch. They were very honest and said that Brooklyn would not manage just yet on their 5 day a week routine and it would be more beneficial to ease him into it. Ideally that means an hour a day at a cost of £41ph.

The way they spoke to me and the treatment style they have proposed for Brooklyn, has for the first time in his life opened a doorway to him having a chance at some kind of life where he can be the best that he can be, and maybe able to interact with other people on a different level that before was only ever a dream to us.

By retraining his brain and retraining his muscles to start from stage one, we may be able to get him to crawl. If this happens they are very confident of getting the core of his body to accept the seating position. All this takes time, money, expertise, and a lot of hard work from me too as I will have to set into place a whole new regimented routine with Brooklyn to help him stand a chance of achieving this.

Living away from my mum means that I do not have any help on my door step and the only person I can rely upon for help is Tammy (Brooklyn’s carer) but then she can only come for 4 hours a week. So we are in a huge pickle. It is going to be hard as Brooklyn’s dad is going to have to take a huge amount of time away from work to manage school runs and then he will be losing out on work as he cannot leave the girls as I will not be here.

This is all going to be very painful for Brooklyn as was seen today during the assessment and it is going to be very hard watching him undergo the intense work needed to give him a chance, but it is a chance! A chance we all thought would never be here.

Our local Trust is trying to set up a gift aid page for all who are able to, to donate towards the treatment for Brooklyn. Every single penny counts no matter how little. Having a child with so many special needs and a child that suffers daily from pain and not being able to help is heartbreaking. No-one realises just how exhausting and time consuming it is. Brooklyn’s sisters are affected and so is our whole world. I am totally run down and exhausted but I have to keep smiling and I have to keep going otherwise who will be here for my family.

People like to believe that because you are smiling everything is ok but never take the time to ask if this is actually the case. It saddens me as my son doesn’t deserve people to ‘keep away’ because he is disabled, or stare at him in his mobility chair. What has happened to him is not his fault and he is fighting to be here with his other problems as it is, so help him win his fight.

We cannot rely on physical help from anyone as this never seems to materialize so pleas send Brooklyn a smile and pray xxx

Update 19th April 2010

Hi everyone this is Brooklyn’s mum. I want to help others and I wanted to ask for some help. If I can get lots of people to view Brooklyn’s story (link below) and comment and give it a ‘thumbs up’ I may be able to get onto the home page and then I can really start to raise awareness for poorly children. I will be mentioning Post Pals in my future blogs but I have to wait until I am at that stage in his story.

http://blogs.gurgle.com/BlogDetails.aspx?blId=20929B0EADD17E49&did=1004&UserID=3177

Story written 2010

Antonia was diagnosed at 6 weeks old with Cystic Fibrosis. She has to have physio twice daily and she takes up to 30 tablets a day. She has to have IV antibiotics every 4 months for 2 weeks at a time.

She is a fantastic brave child having endless chest infections and missing out with going out to play when she is poorly. She has regular liver scans as she has liver disease as well as Cystic Fibrosis.

Family life can be strained at times as Antonia has to have a lot of attention and my time. My other two children are often pushed out and have to stay with family when Antonia has to go into hospital.

Update 7th October 2013

Antonia is now moving on from Post Pals, thank you to everyone who has supported her and Maizee.

Update 5th April 2013

Antonia is going into hospital to have a new port fitted.

Update 4th January 2013

Antonia has to have an operation to replace her portacath in her chest as it has failed and no longer allows her to have her IVs through it.

Update 4th November 2012

Antonia is having tests at the moment as we have found out she has liver disease.

Update 17th May 2012

Antonia had clinic yesterday and it went really well.

Antonia recently did a fashion show with her Youth Club in aid of Cancer Research – she looked amazing and did a brilliant job of being a model.

Update 3rd February 2012

Antonia wasn’t very well over Christmas and New Year and had to go into hospital for IV antibiotics as she had a chest infection. She is home from hospital now though and doing better.

Antonia and Maizee have received some amazing gifts and post since being with Post Pals and we are very grateful to for them all.

Update 10th February 2011

Antonia has had a rough past few months. She needed IV’s in December and they finished just before Christmas, so she could enjoy the snow when her line came out.

Antonia is now a borderline diabetic so we have to check her blood sugars. Luckily Antonia isn’t worried about it and I think I was more upset than her as I think she goes through enough.

Thanks to everyone that sends Antonia, Max and Maizee post and gifts, as it really makes their day.

Story written 2005

Anna-Mae was diagnosed with CMT in December 1997. I think I had realised there was something wrong, but was living in total denial. After all, Anna was almost two years old and still couldn’t stand. We had the diagnosis one day and she embarked on her treatment plan the following day. This was very hard for us all, but within a few months she could stand.

She spent the next five years having her legs put into plaster every month for a week, but this non invasive treatment seemed to work really well.

There were lots of highs and lows. We were told that she could go blind and deaf and be in a wheelchair full time, by her teens.

She has continence problems, which are on going, and this does leave her feeling inadequate.

Then in approx 2000, out of the blue and totally unexpectedly, we were called into hospital to see a Dr. that was coming down from Bristol to meet with us. At this meeting we were told that she had a second and totally unrelated disease called Cherubism. Neither Andrew nor I had ever heard of this condition. It was explained to us that the bones in Anna-Mae’s face, were being eaten by tumours. She has many benign tumours that will grow very aggressively, and may leave her beautiful face very disfigured. She had only cut 8 teeth, and they are all misplaced in her mouth. Some are upside down while others are back to front; she even has one to erupt up into her nose cavity. Andrew and I both struggle with this condition and still find it hard to come to terms with.

The problem is the two diseases are not compatible with each other. The CMT which is a form of muscular dystrophy means her balance is very poor, and she has many falls, but the Cherubism, dictates that her face must not be injured. This is because her bones are paper thin and very fragile, and the tumours run a risk of malignancy and/ or rapid and aggressive growth if they suffer trauma.

Anna-Mae is an inspiration to us all, with her zest for life and her courage. She openly tells the general public, that may be staring or making comments about her teeth, just what her conditions are, and invites them to ask her questions, making people aware and helping people to understand. She is a very popular little girl in the town, and very special to all that know her.

Update 7th April 2015

This month has mostly been up with a couple of downs. Mollie and I went up to Leicester as we qualified for the Winter National Championships. What a fantastic weekend we had. Mollie was a real star and we won our championship class and got a 3rd in the open team test. I was competing alongside Olympic riders. I felt very privileged to be there. I think I slept for 2 solid days after our return and once the adrenaline had worn off. I have booked Para camp and also have a couple a summer qualifiers to attend, so I’m working the horses hard to improve us.

Health wise I have been good, other than needing to have some screws removed last week as they had broken through the skin. While they were working they discovered some ‘dead’ bone also had come through, which they removed. I have noticed this weekend 2 more areas where the bone has broken through, so I am a little worried that my body is rejecting the bone. It does seem a little strange, as it was my bone they used. I have to go to the hospital tomorrow for a specialised CT Scan.

I have received an appointment to go to Worcester at the end of April to see a specialist and Mum is ringing them tomorrow to find out if that is for the next operation or just an appointment. He did say in the February appointment that the next operation needed to be done ASAP.

The time has come now my 19th birthday is this week that I have to “Move on” from Post Pals, but I have been dragging my feet, as I feel I am saying “Goodbye” to part of my family, but I know it has to be done.

So with a heavy heart I am ‘moving on’ not to pastures new, but with lots of love and lots of new friends/cousins. I am on Facebook, so I am sure you will be still be able to watch what me and Mr Darcy are up to in the Dressage world. I am striving and working hard to reach Tokyo or the Olympics at some time in the future.

I would like to thank everyone for the amazing mail I have received this month. The hand made Easter cards have been amazing! I loved the Thorntons Easter Egg with my name on, it’s just too nice to eat!

Your mail really has made such a difference. Thank you so much for all the mail I have received over the years.

Love always, Anna xxxx

Update 4th March 2015

Hi everyone, thank you all for the amazing mail and gifts. I used my beautiful brow band and stock when I took Woody hunting recently. It was a beautiful sunny morning, but FREEZINGGGGGGGGGGGG cold! Woody loves to hunt, but I can only usually manage an hour as I get so tired and that’s when I fall off, but this time I managed 2 hours. I think the new brow band and stock gave me the extra strength. I also received an AMAZING drawing from Claudia in Portugal ****”””WOW”””****!!!! I absolutely love it. Thank you so much. Thank you also to everyone who had written to me, your letters kept me perky while I was unable to do very much post surgery, and I really do appreciate the time you take and the thoughts that are given to me.

I had a check up with the consultant 2 weeks ago. He was really impressed with my healing and progress. I am due to have the second surgery in May, but this time I have to travel to Birmingham, and then the last surgery is due in Oct/Nov. I can’t wait!!

I am working hard on Molly at the moment with Debbie my Para dressage coach, as I secured a place at the Winter Nationals in March. I am really excited but also nervous about going. I took Molly to a competition on Sunday, to a summer qualifier, and scored 68.75% and 70.48%. I was really thrilled with my scores and gained some valuable points towards the summer qualifiers.

All my love to you all of you xxx

Update 11th January 2015

Thank you everyone for the wonderful Christmas cards and presents. I will smell beautiful all year with the lush products I received.

I had my big surgery on the 25th November and it went incredible well. The surgeon is amazed at how well I have done and recovered.

They did a big bone graft, taking bone from my hip and rebuilding my face after removing lots of tumours. Chris (one of the surgeons) said it was like something from a different planet, as the tumours had a ‘blue ‘ look to them, were lucid and stuck to everything, having to use a nurse to remove them from his gloves. I asked to see the photos of the surgery, but they only had photos of the grafting. It was amazing to see and hard to imagine that was me!

I have also got my new chin, and I love it.

My surgeon is transferring to Worcester so the next part of the reconstruction will be done up there (hopefully) if Torbay will pay the fee. Everything is about funding! I have to have another CT scan in May and hopefully the next operation will be done in June.

I did go back to college last week, but was sent home as they need a letter from the consultant before I can go back, as it was such a major surgery.

The consultant told me on Friday that I have to stay away for another 3 weeks as the bones need to become more stable in my face, so Mum and I are going to Center Parc’s for a short break, which will be great.

I bought my new dressage horse on the Sunday before my surgery, so I am still waiting to start training/ riding him. He is very beautiful and called Mr D’arcy (or competition name Priceless). He is 17 HH chestnut gelding. I have a lot of big competitions coming up starting in early March, so I am literally chomping at the bit to get going.

Happy New Year to you all and thank you again for all the wonderful post.

Anna xx

Update 28th November 2014

Please keep Anna-Mae in your thoughts today. She is having pioneering surgery expected to take 8 – 10 hours. Her surgeon will take bone from her hips and will rebuild her face after removing some of her tumours.

Update 30th September 2014

Things are good for me at the moment. I have gone back to college and started a 3 year equine course. They are a really great student group this year and college life is very good.

Health wise, things are OK. I have had hundreds of hospital appointments over the last 8 weeks or so – well, it feels like it has been hundreds!! Mrs D from Torbay has introduced me to new a surgeon who has come over from Hong Kong and it seems he is willing to do the surgery. He is in talks with Hong Kong and GOSH to see if it is feasible to do the surgery here as opposed to London. I really hope this works out, as it will be good to be closer to home. I have to go back to hospital on 10th October when I will find out.

My dressage is going from strength to strength. I competed this weekend in a Para dressage competition and got 2 first scoring 70.23% AND 71.76%, which means I will qualify for the winter nationals. Hooray!

I would like to thank everyone for the amazing mail. It is so lovely to know that people are thinking about us. I have been really bad at writing and sending cards out over the summer, but I will get back into the mode soon.

Sending my love and thanks to you all, and great big huggles to Viks and Kim.

Update 30th April 2014

I must send MASSIVE apologies to you all. I feel really bad that I haven’t sat down and sent in an update. Mum keeps nagging me and I can’t really offer an excuse, except my motivation has been low due to tiredness etc.

Thank you so much to everyone that has taken the time to write to me and for all the lovely gifts. I really do love and appreciate every one.

I was left devastated early March when the hospital told me days before my BIG operation that it was cancelled. They said that they would look at options again when I reached 30. They were worried about the effect surgery would have on the tumours.

Mum went back to the hospital alone to speak with the surgeon. It was then decided that I will be referred to Great Ormond Street Hospital. I have had a couple of appointments and the surgery is back on and the consultant wants it to be sooner rather than later.

They will rebuild both my upper and lower jaw and eye orbits with a graft from my hips, give me a full smile and a new chin. I can’t wait. I do keep reminding myself that it has already been cancelled once.

On a massive positive side, I was assessed and approved for para dressage with both the RDA and BD. Mum took a call a few weeks ago asking if I would ride for Somerset in a big competition on the 4th – 5th May. I have been working really hard with my instructor Debbie. I am borrowing Debbie’s horse, Molly. Please send me positive thoughts. I am also doing para dressage in Cornwall on 13th and 20th May.

I took Woody to a local show last Sunday. She is such a babe. She won a 6th, three firsts and we got show reserve champion.

Update 5th December 2013

Hello and Ho Ho Ho to everyone!! This has been a good and quiet month for me. I am settling in well at college, but have had to come home a few more times as the cold weather is playing havoc with my legs. There is no one quite like your Mum when you need an extra cuddle!!

The specialist has put me onto Gabapentin to help with the muscle spasms, but after my dose upped a bit, the medication made me feel terrible, so they have lowered it again until I get used to it.

College is going really well and I passed my BHS Road Riding safety yesterday. I took Woody over to do it on her as she is so sensible and reliable. Toby is still very young and ‘green’ so he wasn’t up to the job as they say. He has settled really well at college too. People are giving him treats when they walk past him, and he has started nibbling. I was saying ‘naughty boy’ but I have now decided I should be saying ‘naughty people’!!

I have got a joint clinic appointment next Wednesday and I am hoping they will give my surgery date. Please give me lots of positive thoughts before the appointment. They really are keeping me waiting!! I was praying that it would have been sorted before I went to college.

I have made some really nice new friends at college, especially one called Meg. She seems so supportive to me and is completely non judgemental. Her brother died from CMT (I think, but don’t like to ask outright for fear of upsetting her). In fact her whole family are lovely. It feels like home from home when I visit her house.

Thank you so much to everyone for all the letters, cards and gifts, you have sent me this month. There have been fantastic Lush parcels. Mum sends all the mail to college and it is really comforting to receive the mail. I suppose it makes me less lonely, because I feel quite alone there, away from everyone sometimes… if you know what I mean. I like to put my Hot Blanket on and snuggle in to read it all. It is SOOOOOO cold at college!!

Right I will need to go now to do some work, so I want to wish every single one of you a really Happy Christmas and Peaceful New Year. Hopefully this will be my last peaceful New Year as I will be 18 next year… If you know what I mean!!

Lots of Love, Anna xxxx

Update 29th September 2013

At last I have some time to sit and update you all. I really am sorry that the updates are slow. It seems that whenever I do have some spare time, all I want to do is have a bath and go to bed.

Thank you all for the lovely letters and presents sent over the summer. The make-up was really useful, the horse biscuit was delicious and the hand cream was very welcome, especially as the weather is turning colder and I seem to have my hands in buckets of water all the time.

I have started my course at Bicton and loving life! I have made some really nice new friends but best of all is that Toby has joined me (my new horse). He is loving his stable and it is lovely to see a familiar face when I get up in the morning. Mum complains that I’m going to bankrupt her, but I know she is secretly pleased for me.

I have managed 3 weeks without my wheelchair, but I gave in this week and asked Mum to bring it over to me. I have decided it’s better to have my chair than keep falling over and looking stupid in front of people I don’t know, but more importantly, who don’t know me. Oh well.

I have had loads of hospital appointments over the summer and the prospect of my big surgery is coming close. The surgeons can’t decide what they are going to do, and every time I see them we are given a different plan. I don’t think they really know what to do because they openly tell us they have never dealt with Cherubism before. I had a CT scan a few weeks ago, as they now think there is a tumour eating away at the base of my sinus cavity, and that seems like it will cause problems for the surgery, but I’m keeping everything crossed they find a plan and just get on with it. I’m fed up being strung along. Its very disappointing and I know my confidence is taking a battering. Charlie, my older brother, is getting married in 5 weeks and I hoped I would have a nice smile for the photos, but hey ho, there we go.

There is nothing else going on in my life at the mo, but I will keep you all updated as and when it is. I have taken up dressage now and left the show jumping behind me, much to mums delight. I really enjoy dressage and am doing very well on both Woods and Toby. I went to Upton Pyne Equestrian centre last weekend and got a second on Woody and 3rd on Toby. If anyone is interested you can see photos of me on both horses doing the tests if you put in Upton Pyne equestrian centre on google. At the beginning of this month I took woody out for the first time this year to a local show and we came 1st in best hunter, 1st in best combination and 1st in best rider, then we went into the championships and we came away with Reserve Champion. That horse never lets me down.

Thank you all once again for taking the time and effort in writing and for the gifts. I love each and every one of them.

Update 3rd May 2013

I want to thank everyone for all the wonderful gifts and cards you sent when i was in hospital. I feel like i have spent a lot of time in there this year and I am hoping to spend even more time in there, as there is talk of me having surgery to rebuild my mouth and give me permanent teeth in the next few months. I am keeping my fingers crossed as we have been told this before but nothing ever came of it.

I am going to college in September and it would be ideal if i could start without being and looking different, as over the last few months it seems to be having more of an impact on the general public than ever before and consequently it is leaving me feeling rubbish about myself. I only have 4 school days left until i can leave and i can’t wait. I feel sad that the last year has been so terrible, as I was really happy at that school until joining 6th form.

My holidays will be spent with Woody, who has been lame since a fall in January, and also my new horse, TOBY!!! He’s lush! He’s a 15.2 dark bay, thoroughbred X Connemara and he was 5 yesterday. He is such a baby, he wants cuddles and is cheeky when he tries to nibble you and search for treats in my pockets. I am taking him to a show on Sunday, which I am really looking forward to as it will be my first show on him. Mum wont be there which is a bummer but she has a foster placement and she isn’t allowed to let them join in with family activities. Dad will be there though, but he’s allergic to horses!

I would like to thank everyone for all the letters, pressies and cards, that I have received. I love the lush bombs, they make my room smell delicious and then me when i have a bath. Thank you for the book about the girl who loves horses, I started reading it last night, it’s going to be one that is hard to put down. Thank you for the painting by numbers. I am slowly working my way through it. It is much harder than you think it’s going to be, as everything is so tiny. Special thanks to Kim, you really are brilliant. I always have mail from you. I feel really tight because i am taking you away from someone else.

Lots of love and hugs to you all,

Anna xxx

Update 10th January 2013

Just to say, Anna-Mae has been admitted to hospital to have her appendix out today.

Update 14th December 2012

I’m really sorry about the delay in updating. I have been encouraging Anna for weeks, but she isn’t in the best place emotionally at the moment. She feels very low and things aren’t going well for her. Physically she remains the same as usual, although the colder winter months do cause Anna some discomfort as her legs seem to work even less and she seems to fall more often. She has had a bad time at school with bullying this term, which only came to light a couple of weeks ago, plus her wheelchair has been trashed 3 times over the last couple of months, and the last episode was the icing on the cake. They have snapped her frame, arms, and cut out the seat and back, leaving the chair irreparable. This has knocked her confidence no end, but I must say the school have been brilliant in dealing with it. None the less… she is without a chair at a time she really needs it, and has had numerous falls, which have all added to her feeling of worthlessness.

She is desperate to leave school and go to college. She feels it will be a new start for her, and she doesn’t like me very much because I am making her stay to retake her GCSE’s. I keep telling her “it’s all character building” but oh dear…

Health wise she remains her usual self.

On a more positive note, she has received 3 parcels. One for definite is from an elf, as it says so on the box. She has had lots of lovely Christmas cards and they all flutter behind the door when anyone arrives. She enjoyed a cup of tea from Norway and received a lovely card and letter from Finland today. She also had a lovely long letter from Natashja. Anna dreams of going to center parcs but we have never got there. A day in a spa sounds like heaven i must admit! Oh and by the way the letter didn’t rip!

I hope everyone has a wonderful Christmas and peaceful (as peaceful as it can be) New Year.

With lots of love and thanks to you all xx

Update 13th September 2012

It feels like ages since i did an update, so thank you all for the amazing amount of postcards i have received over the summer as they have all been beautiful. I have stuck them all on my bedroom wall, so i can’t remember which ones are from who, but I don’t want to peel them back to check as i used celotape and Mum would kill me as it lifts the paper!

I have had a great summer. I went to OTW and had a totally amazing time. I also had a brilliant time at pony club camp with my beautiful Woody. I did a sponsored bareback ride and raised £102.00 for each of the above charities. My friend, Charlotte Jones, raised some of that and Beth Niel also joined us. It was a really hot day and we rode for 2 hours 40 minutes through the forests and lanes. My legs turned to jelly the following day! They are so worthy. I know it’s only a drop in the ocean but if we all did something like that it would amount to thousands.

I didn’t do very well in my exams. I missed a lot of school for operations and appointments, and I am really embarrassed about it, but I’m going to return for 6th form to do retakes and am doing photography and media studies for A levels. My chosen subject is nature.

I took Woody to a show last Sunday and go two firsts and a second. I was soooo proud of her. I’m off to another show on Sunday, so fingers crossed for us.

Thank you for the stationary items, they are fab and very useful for school.

I hope you all have a great month.

Lots of love, Anna xx

Update 11th April 2012

I just wanted to send an extra big thank you for the lush bath bomb. It smells delicious. Also, I love the books which I collected yesterday from the post office. War Horse is my favourite film and I have never read the book. I am going to start it tonight. A massive thank you to Kim for the Easter package too.

Lots of love and thanks, Anna xxx

Update 9th April 2012

Hi everyone. I want to thank you all for the lovely birthday cards and letters I have received. There are far too many of you to name personally, but they were all lovely. I also have a parcel to collect from the post office which they tried to deliver on Thursday, but we were out, so they left a red card and they don’t open until tomorrow.

I have had a lovely birthday and have been spoilt rotten. I feel very special. We had a BBQ in the rain at the stables and a Chinese tonight at my Nan’s.

I had an accident on Saturday night. I had been babysitting and when i left to come home (in the dark) i fell down some steps and broke my foot. I’m now in cast!!! I was supposed to be taking Woody to cross country schooling on Thursday, but it has had to be cancelled. Apart from that everything else is ok!

We enjoyed a trip to the theatre to see Phantom of the Opera. It was truly amazing. Mum cried all the way through. I now want to go and see Les Miserables. I love all the music to it!!

I had a lovely letter from Malaysia, thank you so much Joyce. I think your English was brilliant. I would never be able to write to you in Chinese!!! I also had a lovely long letter from Clare… thank you.

Update 1st March 2012

Hi everyone, everything is fine with me. I am getting used to my new teeth now and am wearing them more often. Everyone has been really positive about them and say i look great in them. I do forget sometimes to put them back in. I came home yesterday from school to get ready to go to the theatre and i only remembered when i was back at school that my teeth were on the draining board. Mum keeps moaning at me because i leave them everywhere!! I need to get a nice pot to put them in, but i DON’T want a pot like Granny used to use!! Too old fashioned!

I’m going to a show jumping rally on Sunday on Woody. I am really looking forward to it, but I’m also a little scared because Woody has never done one before.

Thank you to everyone who has sent me post. I loved the necklace kit, but i can’t thank anyone by name as no name or address was included. Thank you Kim for all my mail too. The cake sounds brilliant. You’re so clever!

Update 11th January 2012

Hi everyone and HAPPY NEW YEAR to you all!

Firstly I must say a huge thank you to everyone who sent cards and parcels to Anna this Christmas. She had so much mail from all over the world. My lounge smelt delicious as she had lots of Lush products which nestled beneath the christmas tree. Everyone that called in commented how lovely the lounge smelt. I apologise for not naming you all individually but Anna is at school and sadly I can’t remember.

Anna has had an up and down month. She had a new set of teeth to ‘tide’ her over until the implants, but they made her mouth sore and very self conscious. She had a period if illness which rendered her in her bed for a week, unable to support her own body weight, but she is back on top of things now and in full swing.

Thank you once again to everyone who give a little part of yourselves by taking the time and trouble to write. The difference you make is monumental.

Update 6th November 2011

Hi everyone. There has been a lot happening this month in one way or another. Firstly my Granddad died. He had been poorly all week and was very sleepy. I had just arrived at his house to join Mum and Henry. I sat on the side of his bed and he smiled at me, he held my hand tightly and just died. At the time I had a bit of a panic attack, but now I feel really blessed, and will always. It was a really sad time and I felt like my heart was breaking. I used to call him every lunch time and I miss that so much. I was away for his funeral too. It was a planned birthday trip to Aberdeen with my friend Connie, and Mum said I had to carry on and go as Granddad would have been furious if I didn’t, and it wouldn’t have been fair to Connie either.

I had my operation. They removed 6 teeth, 2 tumours and did a bone graft. I was in hospital for 5 days, so I was really pleased with that. I made a nice friend in there and the nurses were all so lovely. I still have a few stitches to come out, but I’m healing really well.

I have taken over Will’s mare Woody as he has gone to college in the Exeter Chiefs Rugby Academy and doesn’t have the time and he is too heavy really. Woody is so lovely, she is a gentle giant. We have decided to sell Lola, through no fault of her own, but I was having too many falls, as she was just too much for me. My balance seems to have deteriorated and she was very nippy. I have had a wonderful year on her and we have accomplished lots together. I will miss her.

Thank you to everyone who has written to me and especially for the lovely Lush products, I REALLY do appreciate them all. Thank you for the emails and I’m sorry I haven’t written back to anyone personally. I have loved reading all the letters and receiving postcards and letters from America.

Please all accept my love and hugs xx

Update 2nd October 2011

Hi everyone. I thought I would give you a quick update as Anna is still in hospital following her surgery last Thursday. She was far more comfortable yesterday and we’re hoping she may be home today. The bone graft was successful, so fingers crossed it takes.

Thank you to everyone who has written, I can guarantee she loves all her mail, I know there is a lovely hand drawn picture of a horse up on her bedroom wall. There are quite a lot of parcels here waiting for her return home. I don’t open her mail, but I do think one is a lush product as it smells lovely in the porch!

Update 1st September 2011

I would like to say thank you to Post Pals for the parcel that arrived today. I will have great fun making the denim bits and bobs when the weather is bad, as I do get REALLY bored when I can’t get to the stables.

Thank you Kim, Kev, and Baby Stevie for the card (and I can assure you Will’s room is MUCH worse than you think!).

I’m back to school next Wednesday BOO HOO and Will is going to be a boarder at college, as it is about an hour away. I’m dreading him going and so are Mum and Dad. It looks like Charlie is also going to be buying a house and moving out too. It’s going to seem really empty and quiet at home.

Update 23rd August 2011

Hi everyone, I’m sorry my update is late, but I have had a really busy month, and have only been home for a couple of days.

First I went to pony club camp with my horse Lola. We had a brilliant week together, but I fell off loads. I think my balance is deteriorating at the moment. The weather was really hot, too hot!!!!!! We only had one downpour.

Then the second week, because I was falling off so much, Mum arranged special lessons for me and Lola. Grandad paid half too which was brilliant. Lola went to stay at Gingerlands for the week and I stayed with Mary and Rob at the stables for the week, then Jenny took me daily leaving at 6.30-6.45am every day. We had a brilliant week together and Sue taught me so much. She was a riding for the disabled tutor and she gave me loads of tips to strengthen my core muscles and help my balance.

I came home on the Saturday night. My bed has never felt so comfortable! I packed my suitcase on Sunday, and then went off to “Over the Wall” camp on the Monday. We had such a fab time. I love it so much. It’s always heart breaking to leave everyone at the end of the week. I’m already looking forward to next year’s camp. I would recommend it 1000% to anyone who thinks about going.

Thank you to everyone who has written to me over the summer, I love getting mail. I really appreciate you taking the time to write and I do feel guilty for not replying to everyone. Thank you Margerette for the lush bathbomb. I had a really long soak on Saturday night when we got home. Mum said I was lucky it was still there as the smell had been teasing her for the last week!

Take care, lots of love Anna xxxxx

Update 7th July 2011

Please please accept my apologies for the delay in an update. Time seems to fly by.

I have been well in myself. I should have had an operation on my face last month, and they cancelled me at the last hour. I was even sat with the numbing cream on my hands. I was really disappointed and angry and they promised they would get me slotted in ASAP, but then we had a letter to say September. I’m feeling a bit fed up with it, but there’s nothing I can do about it. The max fax Doctor said he would start to consider implants, but I think they will need to do a bone graft from my ribs into my jaws. However these things always turn out to be empty promises, so watch this space.

I have had my exams at school and they were Ok… I think. We broke up on Tuesday until September. BRILLIANT.

Gemma went to a new home in Cullompton. I think she missed us loads and gave the young girl a really hard time. I offered to go and help her, but Mum wasn’t keen, as she still gets upset about selling her. She was my best friend and we had a really special relationship, but I know I will have that with Lola my new horse. She is a 16 hh Chestnut mare. She is sweet, but she can be very moody and temperamental. She has got a massive jump. Mind you, I have fallen off her 5 times in 5 days. I had to go to hospital in an ambulance a couple of Saturdays ago. I fell off while jumping at Chudleigh show. The St. Johns ambulance people were just being over cautious. Mum was going to help me back on!

We have still got our foster babies. They only came for a fortnight – ten months ago. I will be really sad when they move out, I’m dreading it. They are so lovely and I love having them around.

I’m looking forward to Pony Club camp at the end of July (30th) for 5 days. We are going to put our tent up at the weekend to test it out, as it hasn’t been unpacked for 5+ years. I hope the mice haven’t nested in it, like they did the last one. I think my friend Gabby is coming to stay for the weekend so we can try it out. Mum said weather permitting!

I feel really bad that I haven’t managed to write back to people, but I truly have been busy. I love getting my mail and I really appreciate it. I’m sorry Kim that I haven’t written, I feel really bad. We all laughed at the Tuna Pasta Bake. You have got a similar sense of humour to me and Mum.

Thank you all. Lots of love to everyone, especially Vikki. I’m glad you have an electric chair. I used to love mine. It really does make you independent.

Update 1st March 2011

Hi everyone. This is going to be short and sweet as I am supposed to be asleep now.

Thank you to everyone that has sent me mail and presents over the last month. I really enjoy reading your letters and opening the surprises. I love the ‘memory’ package from Ali and Alex. The photo frames are beautiful and arrived at the right time, as I have a new horse now (Lola) and a picture of Gemma in the other one. Thank you so much. I have also had a lovely letter from Justine in Baltimore; I think that’s in USA. Kim as always sends me the best cards ever; I really loved the ‘Welcome Lola’ card. Will thought it was a photo of Lola on the front!! Brothers huh!!

I have had an OK month health wise. Some days are good, and some bad, but it’s winter. Summer is on its way. I have to have more surgery soon, but the consultant wants a second opinion before she decides what to do. I think the Cherubism seems to stump everyone. There is something boring into my sinus cavity and they can’t decide if it is a tooth or tumour. I just know it really hurts and I’m not happy waiting while they decide what to do. I also had an extra week off school as I had tonsillitis just before half term.

I will tell you all about Gemma and Lola next time I write as I really have to go to sleep now. Lots of special hugs to you all, especially you Kim, as the baby will soon be here. Anna xx

Update 24th January 2011

I’m sorry I have taken so long to update my page, but life is incredibly busy, and I mean busy! We have two foster babies with us still, and I love playing with them before bedtime, then I crash too! They are so lovely, I think everyone should foster, it’s such a fab experience. It has helped me see my life very differently.

Thank you to everyone who sent me letters, cards and presents. I love the lush products and the make-up. I love all my mail. Thank you, thank you, thank you!

Things have been good for me. My mobility is really improving all the time. I have gone back to swimming training, and although it’s a bit of a struggle, iI can feel me improving every time.
Gemma and Woody are both fine and have managed well with the snow. Gem and I went to a Pony Club rally on Sunday. She was very good for me. I love her so much, although she was a little naughty when asked to canter on the right rein in a circle.

I will say goodnight to you all now as my dinner is ready. Grannie’s chicken soup, yummy.

Lots of love to you all xx

Update 1st November 2010

Anna has had another good month and she is continuing to improve her mobility, albeit very slowly. She is having regular physio and each day she seems stronger. She makes me smile inside as she has managed to get back on Gemma and is riding out often – getting on and off is an art form in progress though!! She has shed a few tears this month out of frustration; she wants to do so much and realizes she is very limited. Patience is not one of Anna-Mae’s fortitudes!!!!

Anna went back to school today after two weeks half term break. We went away to Alton Towers with the tickets Post Pals sent us. We spent two nights in a Travelodge and we all had a great time. It is so precious to spend time as a whole family. Anna went on some rides, but because of her mobility she couldn’t get on the BIG rides, but that didn’t dampen her spirits and she enjoyed watching her brothers get off the rides with a lovely GREEN complexion. Thank you so much POST PALS for the tickets and allowing us such wonderful memories.

Thank you everyone that has written. Anna has had lots of lovely letters and some fabulous gifts sent to her this month. She had the most beautiful brow band, with diamantes set across it in her most favorite colour (red) hand made by a lady that also has CMT. It is lovely to be in touch with someone that shares a likeness as it is so uncommon and Anna automatically felt a bond because of that. Gemma looks stunning in her new bling. Anna is the envy of the yard!! She also received a photo plaque, which is amazing. Gosh, there are some clever people out there!! Sadly Anna has lost her bag, with all her letters in from this month, so she can’t write back. We think Andrew has mistakenly thrown it away when he cleared the conservatory out. If you are reading this, please can she have your address so she can write and thank you all.

Update 5th October 2010

Thank you to everyone who has sent cards, letters and gifts to Anna. Gosh, she has had so much post this month and I couldn’t even start to list everyone. She received the most beautiful cross stitched quilt from lovequilts.co.uk, stitched by many different, very talented ladies from around the world. She cried when she opened the parcel, which made us all emotional too. It is absolutely gorgeous and you can feel the love seeping through the material and from every single stitch that has gone into making it up. She folded it up and packed it straight into her hospital bag. As soon as she came out of theatre she was asking for the quilt. Anna was very poorly following her surgery, and miraculously, the quilt survived unscathed (I was worried it would get stained and tried to take it off her, unsuccessfully). Thank you to every single one of you that sent mail/emails too (you know who you are) as it really does mean so much.

Anna is doing well following surgery and is now getting a little more mobile on her lovely red casts. She is wishing the days away though as the casts were put on too tight which in turn is causing pain, swelling and discomfort. We tried to see if they could be loosened or redone, but they couldn’t be touched until the 15th of October. She was told to stay in bed and elevate. That advice went down like a lead balloon as I’m sure you can imagine. In fact she is feeling a little like the world is stacked against her at the moment, as she asked Mary (stables owner and second Mum) at the weekend, if she could have a little ride out on Gemma and was told “Positively NO!”.

School is brilliant as per usual. Anna has a large part in the school production of “The Match Girls” and she learnt yesterday she has to sing a solo. She said she knew she had to sing one line, but never realized it was one song. I told her she had a beautiful voice and any cat in the Newton Abbot vicinity would welcome her into their choir. She looked at me with her eye brows just under her hair line!! Well I thought it was funny!!

Update 1st September 2010

Hi Everyone. Today is a very sad day as I have to go back to school tomorrow! I’m sort of looking forward to seeing my friends, but I’m really sad I won’t be able to see Gemma so often. I expect she will like the rest though.

I can’t believe the holidays are over, they have gone by so fast. I have had a fab holiday though. I had a week at Pony club camp and really enjoyed it. You can see the photos on my facebook. I had to have a few days at home though afterwards as I was exhausted and my legs just gave up on me! I think I pushed myself too hard.

Then I had a week at Over the Wall. It was such good fun. I can’t wait for next year to come! We were busy from arriving until leaving. Laughing and having great fun. Mum was mad though because I asked dad to drop me off at the stables on the way home, and Mum thought I would be desperate to see her. I was, but more desperate to see Gem haha!!

I have my operation 3 weeks today in Plymouth (tendon lengthening). I am a bit worried about it, but I am also looking forward to having straighter legs, then I will have a better riding seat. I won’t be able to ride for a while because I will have both legs in plaster for 6 weeks after. I hope they will let me choose what colour I can have, like Paul does in Torbay. Mum always says Paul spoils me too much. I always give him a hard time because I like to be different and ask for one tartan (red and black) and another like a ballet dancer (pink and white). I can see the dread spread across his face when he sees me coming. I bet I only get plain white at Plymouth though because they will do it in theatre and they don’t really know me like Paul does.

Thank you to everyone who has written and sent me presents. I love the parcel that arrived today from Alison. It will come in really handy for school, and I can’t wait to do the cross stitch. Mum said she will start it off for me so I can do it when I am home after the op. I also had a facebook message yesterday about a pillow case. I would love one if possible, but I know there are other kids on Post Pals who are really poorly, so if I get one then great, but if not, don’t worry.

Thank you to Kim for all my cards, I love your facts. I keep meaning to send you some facts about me too, but I never seem to have the time. I’m sorry. Here are some for me; I love red. I love my horse Gemma the most in the world. I hate cheese. I keep trying to straighten my hair as I am fed up with curly hair! I snore really loudly. Everyone calls me smiler. I am 5ft 6 and taller than Mum. I have 3 brothers. Talking about brothers, Will has asked me to say thank you for his card for his GCSE’s. We are all really proud of him. He has also been picked to play Rugby for Devon this year. Thank you Grace for your letter and emails, they were really interesting. I will have time soon to be able to write back.

I have to go now as we are going shopping for my last minute bits for school. The best part about going back is getting new stationary.

Lots of love to you all, Anna xxxxxxxxxxx

Update 13th August 2010

Hi everybody, I can’t believe it is only three weeks until we go back to school. I have had the best holiday ever. I have been up to so much with Gemma – I have been to so many shows and Gemma has done me proud, she has been so good at them.

Last week I went to pony club camp with Gem and she was amazing. We did show jumping, dressage and best of all, cross country. Gem was stabled for the week which I think she enjoyed, but I think she is also happy to be back in the field with all her friends. Gem had never done cross country before and at the first time lesson we had she was freaking, but after that she was amazing and jumped everything I wanted her to. In show jumping she was brilliant and she jumped all the fillers and they were scary – bless her, her nostrils were flared going up to all of them.

I also go to Over the Wall on Sunday and I cannot wait but I will miss Gem (but the good thing about it is I get away from my brothers for a week and some peace and quiet). We have so much fun at camp. I know I will laugh from arriving to leaving. We went shopping for some new clothes for me to take – I love getting new clothes. Mum was really shocked when she realized all I own is school uniform and Jodhpurs!

Thank you for all my letters and emails. I’m sorry I haven’t had time to sit and write back, but I really have been so busy. All I want to do when I come home is have a bath and go to bed. Talking about having a bath, thank you Kim for the lush bombs. My Fave, My Fave, My Fave. I loved the camping card too. Grace B also made me a really lovely card with my name on it. I will have some photos to send to you when they arrive. I have been waiting all week. Fingers crossed they come today. Lossa luv, Anna xxxx

Update 5th July 2010

I have a lot of news to tell you this month. First though I would like to thank Sarah, Samantha, Grace, Abbey, and most of all, Kim, for the wonderful cards I have received this month. Thank you so much to everyone for the stickers, the Lush bath bombs, and the cross stitch cushion – I don’t want to put my head on it because it has had so much work put into it. It’s so beautiful!!! It has pride of place on my bed!!

We have a new member of the family and she is called Woody. She is a 16hh Scottish sports horse and she is amazing! She is Will’s new horse.

I have also had a date for my operation. It is the 22nd September which it a good date as I have a lot of things on this summer.

I also did the jubilee challenge back in May and not only did I finish it in 3 hours and 30 minutes, but I also came first. I had the choice to wait for the welcoming committee to arrive or finish first – I never knew I was so competitive, I decided to carry on and come first. Mum and my teachers, Mr Brown and Miss Head, were there cheering at the finish line. I was so proud of myself; I could have burst with pride.

I have been to a couple of shows this month and Gemma has done so well. She got me second in family pony and she let me go under her belly and shake a plastic bag all over her ans she just stood there falling asleep. I came third in mountain and moorland and the judge loved her because she listened to me every step she took. I do love my pony to bits.

We had sports day last week and I was a bit lazy because I only put my name forward for relay.

Gemma has been jumping really well at home and I jumped 2″9′. Bless her, she has been so good.

I have pony club camp at the end of this month and it has come around so quickly, I cannot wait. We will be doing show jumping, cross-country and flat work, plus loads of activities in the evening. The only thing I am worrying about is everyone goes out in the night and goes onto the cross country course to mess around, but I cannot walk in the dark, my legs and brain don’t work together. I bet when I get older people who don’t know me will think I am drunk. By the way, no-one is allowed out of their tents at night.

Two weeks after I am going to OTW and I cannot wait!!!! I am going to the one at Bryanston School again this year – it will be so fun! I am also breaking up from school tomorrow.
Lots of love and thanks to everyone for all my mail, email and pressies. I do love getting mail; it makes me feel so special.

Update 5th May 2010

Hi everyone, I just wanted to write a quick thank you to everybody for all your lovely mail. I’m sorry if you didn’t get a proper reply but I am having a hectic time at the moment with lots going on. I am writing this before my swimming training and I want lots of sympathy as we have moved into the outdoor swimming pool and it’s freezing here in Devon today!

Thank you Emma for your lovely bunny card, it sounds like you are really busy with all of your animals. I love the photos Bobbi Sara, she looks really cheeky and very strong. I am going to do my first show jumping on Sunday with Gemma. I can’t wait, but Mum is dreading it. I don’t think Mum can come because we have a foster placement here at the moment and the baby is only 10 weeks old, but Dad will be there which will be funny as he is allergic to horses! Thank you for the bunny, it looks really life like. Thank you Stephanie, Dominic, Karen and family for the card and pressies. I have got my school locker key on the dolly keyring. Hello Tara Jane. Your house sounds as busy as mine. My brother Will is 15 and very annoying. We always fall out but he’s ok really, but I wouldn’t tell him that. He gets into trouble at school because he always sticks up for me, which I do like but not always and then he gives me a hard time because of it. Thank you for letter Joanne, you have really lovely writing. I wish mine was neat, as sometimes I can’t even read what I write. I can’t believe you are only 11. Hi Kim, I haven’t written to you in ages, but we do speak about you lots. I hope you are OK and Kev.

Lots of love to you all, Anna-Mae xxxxxxxxxxxxxxxxxx

Update 2nd May 2010

Anna has had a fab April. Her pony Gemma wasn’t too well, so all of Anna’s time has been spent seeing to Gemma, and giving her lots and lots of love. She spent 3 weeks in the stable and lots of pampering was needed. Andrew and I giggled quietly to each other. It was like a hospital stable and instead of grapes it was carrots, and swedes and all different flavours of Lik-its. None the less Gemma thrived with Anna-Mae’s love and attention and she is now back in the field with the lovely spring grass!!

Anna-Mae had lots of lovely cards and birthday pressies. Kim you do spoil her!! I benefited too though as I get the second dip of the Lush bath!! Thank you to everyone who took the time, effort and expense. It really does mean so very much.

Update 31st March 2010

This has been another great month for Anna- Mae. She has enjoyed spending sunny days with her beloved Gemma. She has had numerous hospital appointments, but Anna-Mae always stays up beat about things.

I have been incredibly busy with work and have a Mother & Baby Placement at the moment, so my time is deflected away from Anna which she manages really well.

She learnt yesterday that she needs an operation to remove a tooth (the nasty offending one) but it has a large tumour wrapped around it and they aren’t sure how things will be. Anna remains very matter of fact about it and it’s just a case of ‘get on with it then’.

She was disappointed she couldn’t do the cross country run, but I was quietly glad as it rained and rained so would have been too muddy and slippery for her to cope with.

She has had so much post this month. Thank you for the fab Jodhpurs Kim. The flowery ones were a tad on the tight side but the green ones fitted like a glove. She thought they made her ‘Bum’ look lush. I have managed to wash them now, as they slowly turned from green to Mud colour. She was really impressed with the make up, from Natasha, and it arrived very timely as she is going to the cinema tonight with Tory. She has had her nose buried in the BIG book of horsemanship every night; she is going to be an expert!!

My goodness, everyone is so very kind, it’s so heart-warming. Thank you all. I’m sorry if I haven’t mentioned everyone by name, but my memory is shocking!! You know who you all are!

Happy Easter to everyone and bring on the sun!

Update 16th March 2010

Thank you so very much for all the posty Anna-Mae has received this month. She absolutely loved the necklace that came all the way from USA. It was her favourite colour blue and she thought the horse looked like Gemma! Her friend at the stables was green with envy. Thank you also for the stickers and the letters. Kim, you always send the loveliest cards. We can never find anything like your lovely ones, and we’re glad you are OK now. Kate D, your handmade cards are lovely. Hope your sailing is going well. The weather has been so beautiful so hope you got out! I’m sorry I can’t name people by name, but all post received gets taken away and put in Anna’s lockable memory box.

Anna has been really well this month, except for a cold/throat bug that sent her home from school, and kept her in bed for 3 days. She made a full and quick recovery and went back to school with vigour.
She is toying with taking part in the Inter house cross country on the 29th. She has a hospital appointment, but asked me yesterday if I could get her back in time. She managed to do 1 full lap last year, but this year she wants to do the full 2 laps. She likes to challenge herself.

Talking about challenging herself, she has been selected to do the Jubilee Challenge at the Ten Tors challenge. Her twin brothers Charlie and Henry did the Ten Tors twice. It is the most amazing experience and you can look it up on the net – just type in www.tentors.org.uk. We are so proud of her. She just has the biggest spirit. Her school is very proud of her too. She is only the second special needs girl the school have ever put forward.

Thank you once again to everyone who has sent mail of any kind, it is all really appreciated.

Update 31st January 2010

Hello all. January has been an incredibly fast month. We have enjoyed some beautifully pretty white stuff (snow), having extra time off school and being able to go sledging was just fab, but I was relieved to see it go. Anna and Will were so disappointed every morning when it didn’t arrive as promised, then it arrived when it was least expected. It was enjoyed for about 4 days, but when the realization came that Anna couldn’t ride Gemma for safety reasons, she in particular saw the down side of snow!!!

Anna was only back at school for 2 days, when she had raging toothache. She begged the dentist to pull it, but the dentist can’t do anything without first speaking to Anna’s team in Bristol. Thank goodness that was the case, as she was told that a large tumour was wrapped around the root of the tooth, and having it pulled was an unknown territory. She was given strong antibiotics and the plan is she will have to go into Bristol where there is a full surgical team. Thankfully the tooth has settled down, giving some time for her consultant to get advice. Long may it last!

She was at home feeling pretty sorry for herself when the postman arrived with a fabulous large parcel – talk about heaven sent. WOW, it was filled the most amazing goodies. Thank you so much Kim and Kev. You so made her week!! The T-Shirt is worn, washed and ready for the next day along with the socks- if I’m lucky!!

She also had an appointment with her Neurologist last week. Her legs are becoming very tight again and the muscles weaker, leading to her feet dropping, putting her gait wide and her balance out. He decided she needed surgery again, lengthening her tendons in her legs and sorting her ankles out. He told her she would be in plaster for approx 7-8 weeks, and asked her if there were any times to avoid. She sat there quietly thinking, and assertively told him, she had plans. She told him she would be ‘free’ from September. He giggled and jotted it down. Bless her!!

Thank you to everyone who has sent Anna mail, it really is so wonderful to receive all mail. I’m sorry I can’t list names, but Anna is in bed, so I can’t ask. She loved the bracelet and a beautiful sparkly heart necklace, and sneaks them inside her school uniform. She has a pile of letters to reply to, where addresses were included, but she hasn’t been firing on all cylinders for the past few weeks. Be patient – the letters will arrive!

Update 28th November 2009

Hello everyone, thank you for all the letters and cards. I have had loads of mail this month, especially from America and Germany. To Kim … yes yours was the first Christmas card I received and I love the zebras! I haven’t written any yet. I just don’t seem to have enough time in a day. I need 36 hours not 24. Actually I have written 1 and mum posted it today.

I have had a great month with Gemma. We are really improving together with our jumping lessons. Mind you, I fell off today in the biggest deepest puddle. My teacher couldn’t help me as she was laughing so much. I was lying like a star with water up to my chin. It was a good job I had a change of clothes. It has lashed with rain everyday for the last 10 days, so I am sure you can imagine.

I have tried to persuade Mum and Dad to put the Christmas tree up tomorrow, but they both say next weekend is soon enough. I can’t wait. I am so excited about Christmas. I have given mum and dad my list. It’s very long, but it’s all for Gem except a DVD (My Sister’s Keeper) and Lush bath bombs. Mum thinks I should choose something for me, but I love her sooooooo much. I bought her a Christmas stocking today from Red Posts, with horse treats in it.

I am hoping to go hunting again on 23rd December. Mum says she’ll think about it, which usually means yes. I don’t ask Dad, as he is never keen to let me go.

We are having a quiet Christmas at home. It will only be me, Will, mum and dad.

School is brilliant. I love my school. I have had some fall outs with some of the girls, but that’s OK, as long as my special friends are ok, I don’t mind. I break up on the 11th December.

I am going now as the X factor is on and I am missing it too much. I love Lloyd. He is very yummy.

Have a great Christmas everyone.

Update 31st October 2009

Anna has had a great month. She lives her life to its fullest and enjoys every moment. She asked if she could have a spell in plaster as she was feeling very tight and her mobility was compromised. She was pleased with the results and says she feels a good benefit.

Anna went to Bristol this week to see her consultant about new teeth. She shocked everyone in the room when she announced she has decided to forego any dentures or bridges or any cosmetic reconstruction. Her consultant asked why she had made this choice and Anna replied “because I want to be just me”. My daughter amazes me and I respect her courage and tenacity! She also complained to her consultant that she had to miss hunting on Gemma to come to Bristol, with some disgust. He assured her he would work around her for future appointments should they clash with any horsey activity!
Grandad’s Chemo started on 21st of October and he is doing great. Not as we expected at all. He hasn’t lost any hair yet, sadly not from his eyebrows. He chuckles every time I mention them! He has been extra tired, but if that’s all he has to suffer he is so lucky. Mind you he is worrying that it’s not working properly! There’s no pleasing some hey?!

Thank you so very much for all the wonderful letters, cards, and pressie Anna received. Thank you for the great DS game Anna received (a horsey one) as she has relaxed every evening playing it. She had her handbag stolen out of our car a while ago and all of her DS games were in the bag. As the bag was left in the car, we weren’t covered on insurance! Typical. It was a silly mistake I made, but as the hand bag was used for toys and make-up etc (typical teenagers’ bag) I didn’t think about it being a risk. We live and learn.

I hope you all have had a great half term and a happy Halloween. Its bonfire night next week, so all stay safe, then its full steam ahead to Christmas! Where has this year gone?!

Update 1st October 2009

I must apologise for the missed update last month. We have been so very busy with one thing or another.

Anna had the result of her scan she had back in the summer, and she has now been diagnosed with Retinitis Pigmentosa. That was a bit of a blow, but hey ho, onwards and upwards!

Then she had a riding accident and the horse’s neck came up and bashed her in the face. She had a small fracture and lost her bridge. That devastated her more than anything. She was so worried about facing people with no teeth, but I must say everyone accepted it really well, not making anything of it. She was surprised that that there were no nasty remarks and it has actually done her confidence and self esteem the world of good.

She has a Bristol appointment on the 28th of this month and hopefully they will have a new set of teeth waiting for her!

Anna has had some lovely post this month. I do apologise for not mentioning everyone by name, but my memory isn’t what it used to be. Thank you all so much for giving your time, it really does mean so much to us all.

Kim, thank you and your fiance so much for the lovely letters and cards you send so religiously. Anna really enjoys reading your happy chatty mail. She loved the monkey that Kevin sent her from USA, along with the postcards. How wonderful to travel along route 66.

Update 3rd August 2009

Hello everyone. This will be just a short note this month as I am incredibly busy and incredibly tired with a Foster child at the moment, rewarding as it is.

Anna has had a great month spending all of her time with her beloved Gemma at the stables.

She had a special brain scan last weekend regarding her eyes. We are waiting for the results, but she remains very well.

Thank you for the mail and gifts she has received this month. She has made her phone look very sparkly with the phone decorating kit she received. Kim, the books you sent were brilliant. Anna has gone to the OTW camp this week. She took one of the books with her to read on the train journeys up and back. If there is anyone who would like to see the photo’s of last years camp, go to http://www.otw.org.uk/ and look at the photo album.

Anna went to Bryanston in August. The children all have such a wonderful time, as you can tell from the photos.

I hope everyone has a great month and lets all pray for some SUN!!

Update 30th June 2009

Anna-Mae has had another great month. She did have numerous hospital appointments which went well on the whole. There does seem to be a problem with her retina. She has developed white spots on her retina that indicates it’s dying. She has to go for further tests though as the consultant had not seen this problem before. She has to have her head wired up and they will do electrical impulse tests. They think it’s connected to the CMT, but it could be the cherubism as well.

Anna-Mae took Gemma to Dawlish show where she won 2 rosettes. Then on Saturday she went to Chudleigh show and won a 4th for best family pony. That was a very long day as she had to hack there with all the other girls from the stables, but luckily she was offered a lift home in a friends horse box. She went to bed at 5.30pm on Saturday and got up at 10.40am on Sunday morning! Bless her; she must have been really tired!

Yesterday she had a swimming gala. She swam in 5 races and won 4 of them. I was really pleased that her friend Tom won the breaststroke races. Tom has Down’s Syndrome and one hand. He was so proud and he swam brilliantly!

Thank you to everyone who takes the time to send post. It really is appreciated. Kim you send really lovely cards. The strawberry card has been left in the car. It smells delicious. Thank you also for the Lush gifts. Lush is Anna’s absolute favourite treat. We try to have a special bath on a Wednesday night when Andrew takes the boys to the cinema. Then we give each other a pedicure and paint our toe nails. This week we are planning to have a face mask, but they always seem to make me erupt in massive spots that resemble Mount Etna! We both treasure quality times together. I hope you got the photos of Anna and Gemma.

I am really sorry I have to go now as Will is pushing me off the computer, he is telling me it’s for homework, but I reckon its facebook and MSN really. Take care to everyone and have a good month.

Update 1st June 2009

I have had a really good half term. I spent all my time up at the stables with Gemma. I bathed her on Friday because it was very hot. She loved it. She smells all lovely and she is so soft. She had her birthday too and I spent all my savings on buying her things. Mum was really angry with me, but I had saved up all my money. Mum never stays mad for long though and she loves Gem too.

I went back to school today, but was picked up early because I had to have my plasters put on. Paul, my nurse, supports Pompey so he has given me plasters in Pompey’s colours. We give each other a hard time and are cheeky to each other, but I love him to bits. I would never tell him that though. I’m a bit fed up that I have to be plastered this week because it has been 29 degrees here for the last 4 days and my feet really hurt in hot weather. They will be off on Friday so I can go the stables and then back on again on Monday.

I have to go to the eye hospital on Thursday. Mum’s panicking again. I had an appointment at the opticians and they took millions of photos of the inside of my eyes. Aparently my retina is turning white, wich means my retina is dying, but my eyes still feel the same to me. I’m not worried. I will let you know what they say, but I’m sure there will be nothing to tell you.

I hope we can go into Exeter on Saturday morning to the Lush shop. All the best shops always seem to be in the cities.

All my exams went well, I think. I have to wait though for my results. We keep asking the teachers, but they all say they haven’t been marked yet.

I am in the school choir and we are singing on the 12th for the town that twins with us from Germany. I am looking forward to it. I love singing, it makes you feel really happy inside.

Sending my love to everyone and thank you for all my mail. Kim always sends me fantabulous cards and I love getting mail from her. Thanks also to Viks for the beautiful handmade card.

Update 4th May 2009

We got back from holiday at 6am this morning (we have been away on a cruise). We got on the ship in Egypt and sailed all the way up the Suez Canal and ended up in Ibitha. We stopped at Alexandria, Cairo, Naples, Sicily and Barcelona. It was so lovely. Mum was worried that we would be bored, but it was fab. I went to the children’s club 3 times everyday. I really loved it. We visited Herculaneum in Naples. It was very interesting and very sad too. The whole village was burnt alive when Vesuvius erupted. It took 3 days for the burning mud and lava to reach the villagers, but there was nowhere for them to escape to. They would have seen it coming. They must have been terrified. We were doing all about volcanoes and Pompeii at school just before we went on holiday. I would have liked to go to Pompeii but there would have been too much walking for me.

Mum fell over in Barcelona and has torn all her ligaments again. I feel really sorry for her. She has been crying for days. She has got to go back to hospital tomorrow. She thinks the surgeon will be cross as he only repaired her ligaments about 7 weeks ago. Her leg is massive and she can’t walk again. Will is also going to hospital tomorrow because he snapped his collar bone just before we went away. He has got to have a plate fixed so it will mend properly.

I am looking forward to going back to school tomorrow. Gemma is doing fine. I think she was pleased to see me today.

Thank you Kim for our lovely cards, they were really funny. Will was very pleased with his rugby one too. Thank you to everyone who has sent us mail. I really love getting post.

With all my love to you all, Anna xxxxxx

Update 31st March 2009

Gosh, the postman has been incredibly busy this month bringing wonderful letters, cards and presents for Anna-Mae and Will from all over the world! Anna-Mae even had a lovely long letter from Percy the Poodle! I would like to say hello and thank you to everyone, especially Kim, for the mail. Anna-Mae has been so busy with Gemma that she hasn’t found the time to sit and write back. She has had every intention to write, but sleep always wins at the end of each fun filled and action packed day! I feel like I am always saying don’t worry tomorrow we will write, but that same old story, tomorrow never comes. Please accept our apologies!

Anna-Mae has had a brilliant month and we haven’t had a single appointment! WOW, that never happens. It’s been wonderful. I had a hospital appointment yesterday regarding my knee and the recent surgery I had, and the staff were all coming over showing concern as they hadn’t seen Anna. It felt so good saying she was doing so well.

Here is a message from Anna-Mae;

Firstly I want to apologise to everyone for not replying to my letters. I really do appreciate getting mail. We have just come in from the stables and Dad is cooking tea so I thought I would write to you all on my page before I sit down to do my prep.

I am getting on really well with Gemma. She is so beautiful, but as she is getting fitter she is getting a little bit naughty. She has decided that she doesn’t like going out on a hack, but would much rather stay at the yard and munch on her hay net. She is so cute though that when she is in trouble she gives a sweet face and looks at me as if to say “What have I done?” and I know it is going to take a long time before our partnership is 100%.

Thank you for the brown bear that I received on Saturday. He is so cute. I have named him Harvey. He is on my bed with my other bears. Thank you Kim, I will have fun making the Easter Bunny. I did have a quick go but didn’t manage it. I will take my time. I love the duck rubber. We all like collecting rubbers in my class. There is a massive collection of different ones. I had a lovely letter today from Kimberleigh. Your writing is so neat. The paper was really cute too.

I have butterflies in my tummy tonight because we have interhouse cross country races tomorrow. My teacher said I didn’t have to do it, because I know I will struggle, but I have decided that I do want to try. Mum said it doesn’t matter if I jog and walk. It’s the getting over the finishing line that matters. Mum said I could use my kay walker, but the wheals will shake too much, so I don’t think that’s a good idea. My new wheelchair is also hard for me to push myself, so I am going to go on my own legs. I will let you all know how it goes.

Lots of love to all my friends xxxx

Update 8th March 2009

Gosh where does the time go! Another month has gone and everything has been very busy down here in Devon.

First of all Anna had her heart broken when Harvey horse went back to his owner, even though she knew she was only looking after him for the winter months.

Andrew and I also had the worry that my dad, Granddad Gordon, was unwell. I took him to lots of hospital appointments, and last week he had his diagnoses of Mantle Cell Lymphoma. Dad has been staying here with us as his confidence has been knocked, but his spirits are high.

We then decided that we were going to buy Anna her own horse, so we started looking. After a long telephone conversation with a great lady called Chris, we made arrangements to stop on our way back from a Bristol Hospital appointment to try a mare out. Needless to say, after a few long tryouts, we have ended up getting Anna a very beautiful mare called Gemma.

Thank you to everyone who has written to Will and Anna. I will take more time soon and write a better update, but all the children and their friends have just arrived home and need me to sort out their meal.

Update 1st February 2009

Anna-Mae has had the most wonderful couple of months. For her Christmas present we took on a loan pony, Harvey, from 4th November 08 until 4th February 09. She has taken her responsibility very seriously and has looked after Harvey impeccably! I’m sure Harvey has also enjoyed having Anna as a foster mum for the last few months. They have a very special relationship and they have explored all areas of Haldon Forest together.

Against my better judgment, they went on a hunt together, which turned out to be the ‘best experience ever!’ and they both looked very smartly turned out. Granddad and I went to the ‘meet’ and I was filled with both pride and fear! Pride, that my little girl was absolutely devoted to going and succeeding at this massive challenge and sat on top of her trusted steed with her head held extra high, but fear of the unknown things that I could envisage happening. When the master blew the horn and the 50+ hounds ran up the farm lane crying, barking and whining, the horses all excited and trying to keep up with the hounds, my eyes pricked with tears as I caught sight of the look on Anna’s face. Granddad and I raced back to the car to try and follow the hunt, but we spent the next 3 hours traveling all over Haldon without even a sniff of them. We decided after approx 3 hours to make our way back to the stables, with panic rising in my tummy. I wanted to put my foot down and race back to the yard, but if you know Devon’s lanes, you’ll know they are exactly 1 car wide with high hedges on either side and more curves and bends than you would imagine possible. So I had to drive sensibly. The only thing that we met though was the odd pheasant, flapping for his life to get out of the way and up and over the high hedges, and the odd horse making its way back to its respective yard. We did meet with some of Anna’s fellow riders from her yard and we were told she had turned back after 2 and a half hours as she felt she had had enough. That reassured me, but also worried me as I wanted to know why she had gone back.

When we drew into the yard, Anna appeared full of smiles and glowing with pride that she had accomplished what she had wanted to. She was buzzing on adrenalin, and splattered with mud. She had decided to turn around as she felt successful, but knew she was getting very tired and knew a fall wasn’t far away if she didn’t stop then. I was immensely proud of her, for being sensible enough to listen to her body and for succeeding in something I wasn’t keen for her to do.

I must thank everyone that sent parcels for Anna and William at Christmas time. They were all very much appreciated. I’m not sure if Anna has managed to write and thank everyone (where addresses were provided) but I think she has. Time is quite difficult to find since having Harvey, but I do know she hasn’t written to Kim yet. That is my fault! Anna wanted me to pick up a get well soon present, following your accident, but I am not mobile myself at the moment and haven’t managed to get into town. I am having my operation on the 10th February, so I am sure I will be getting around soon after. Fingers and toes and anything else crossed that can be!

Right I am going to have to go now, as I have to collect Anna from the stables. I am expecting tears and a broken heart, as she has to say goodbye to Harvey tonight. Oh dear, another one of life’s horrible lessons!

Update 28th November 2008

Anna-Mae has had another fab month. Her 6 weeks in plaster seems to have done her wonders. That is the longest consecutive spell spent in plaster, but the results are worth it.

She has been riding 4 times a week and continues to improve all the time. Her loan pony ‘Harvey’ is so sweet. He is like a gentle giant. He has even started coming to meet her in the field, instead of making her wade through the mud. I’m sure he knows her struggles!

We went last night to school to watch Anna in the drama production, ‘My Fair Lady’. It was wonderful. All the children put their hearts and souls into making it breathtakingly brilliant. I was very proud, as i’m sure all the mums and dads were! Tory came along to support Anna and made her a lovely card and brought a box of chocolates. Anna felt very special. She had also received a lovely card in the morning from Kim that said drama queen on it. It arrived so perfectly. Thank you Kim. Thank you to Kim, Julie B and Viks. The cards are all lovely. The London Bus card will be placed into a photo frame for Anna’s bedroom. It was very special and really amazing and clever! Thank you to everyone and love to you all.

Update 1st November 2008

Firstly, I would like to say a massive ‘THANK YOU’ to Kim, Julie, Jenn, Viks and Post Pals, for my mail and presents. I love the Halloween cat; it’s sitting on my bed. It’s called Pepper. I love getting chatty letters. I’m glad Kim that your jumping lessons are coming on well. I have a jumping lesson every other week. I love it. Sometimes the horse just walks over the jumps and sometimes he gallops at the jump.

I am so excited as for my Christmas present this year I am loaning a horse called Harvey for 6 weeks, while his owner goes on Holiday to Australia. He is so gorgeous. He is a 14.2 bay gelding with the most amazing long mane and very long pretty eyelashes. I will ask dad to try and send a photo of us together to go onto my page.

Now onto some even more amazing news.

Viks nominated me for a Well Child award, child of bravery. I couldn’t believe it when I learnt I had WON! I didn’t know I had been nominated until Mum said Well Child had telephoned with the news.
The film crew came to school to film me with my friends. It was really good fun. I was in plaster though. I had them on for 5 weeks this time because my legs were really tight. I had them off though on the Friday before the Monday, thank goodness!

We all went up to London on Monday morning at 7am on the train. Grandad came with us too. Charlie had to go on a course for work, so Aunty Viv took his place. She drank far too much Champagne!
I said hello to a lovely lady just after we arrived at the ceremony, and it turned out to be VIKS! It was so good to meet you Viks. I felt so special walking down the pink carpet. Everyone had their party clothes on. There were so many celebrities there. I didn’t really know very many of them, but Aunty Viv knew everyone. I think she was even more excited than me.

As soon as we had been offered a drink, I was whisked off for a photo shoot, for best magazine. I felt really important, like a real celebrity.

Soon after that Henry, Viks and I went to meet Prince Harry. He is so lovely. I couldn’t stop smiling. I thought he was very handsome. He gave me kiss and a cuddle.

When we went into the awards room we all sat on posh tables. I sat next to Iain Wait from Strictly Come Dancing. He was so funny and we talked lots. I told him my Nan thinks he’s LUSH!

I was embarrassed when my video came on. I went onto the stage and was given my award from an Olympic swimmer and Michael Underwood, they were both really lovely. After I sat down at our table Michael Underwood came over and gave me another kiss and cuddle.

After the ceremony we all had to go out for some more photos. I had mine taken with Nick from Nickelodeon. I was given lots of presents. Next had sponsored the winners and gave us all the biggest goody bag. Thank you to Next for all my presents. I love them all, especially the watch and the angora socks. They are so soft.

Update 15th October 2008

Anna has had another fab month. She was so pleased to be back at school. She loves it. She has signed up for the drama production late in November of My Fair Lady. She has a few minor parts by all accounts, but she is also singing a solo and dancing. Oh the excitement! I keep telling her when she is belting out ‘All I want is a room somewhere’ that she has the voice of an angel! I normally get smacked at that point!

She has had 5 weeks in plaster, to help her mobility. She has such a lovely relationship with the nurse, Paul, who plasters her legs. He is brilliant with her. She loves him. He is rude to her and she’s as rude back. They both try and out do each other. He is bossed about unbelievably. She tells him what colour she wants and Paul just does it. Usually she wants ballet ribbons in a contrasting colour and Paul willingly does it. She is really excited as both Anna and Will are going to another ‘Over the Wall’ camp this weekend. She can’t wait. She wants to talk about camp all the time, reminiscing about her time at camp in the summer.

Update 9th September 2008

Gosh, what a busy summer we have had! The time flew by and we were getting ready to go back to school before we knew it.

Anna went away on her long awaited riding holiday, but it didn’t go as expected and she ran up a £150.00 phone bill pleading with us to go and collect her and bring her home. Her school friend had gone as well though and it wouldn’t have been fair on Beth if we had, so we bargained with her to collect her 1 day early.

She had been so excited about the “Over The Wall” camp, but after the riding experience, she was quietly very worried about going away from home again and so soon. I tried to encourage her to help me pack her suitcase, but she really didn’t want to. We were still packing half an hour before we left. She sat silently in the car on the way up to Blandford. When we arrived we were greeted by a lovely looking clown and so many smiling faces, I think Anna was surprised, pleasantly surprised. We all went in together and were shown to her dorm where she met her 2 fellow room mates, Sophie and Rhiannon. Andrew and I thought it was probably best if we made a swift exit as I felt like we were prolonging her agony.

I worried all week about whether she had settled and wondered if she was happy and enjoying her time away (no mobiles allowed, but that is such a good idea). Andrew and I were up early on the Friday to drive and collect Anna by 10 am. I was quite apprehensive about seeing her and wondered what kind of reception she would give us as we didn’t know if she had been really unhappy all week, BUT – we arrived to song and dance out on the lawns. More than that though, Anna was trying to hide in the middle of her new friends, shouting she didn’t know Anna-Mae. She had such a ball! She got so much out of her holiday, she said it was the best holiday she’d ever had – even better than Egypt! She didn’t stop telling us all about her holiday on the journey home (she is working on a long letter to tell everyone all about it, so I won’t tell you anything and her letter, which should be ready soon, will tell you all about it). We arrived home at approx 1pm and she said she needed to go to her room for a sleep for an hour, but she didn’t surface until the following morning. She was shattered!

She has planned her life out for the next umpteen years though. She wants to apply to go back to camp every year until she is 18 and then she wants to go to camp as a volunteer! I think that says a lot.

Anna-Mae, Granddad and I, were also invited along to St. Matthews Sunday School by a lovely lady called Judith, to collect a cheque that the Sunday School children had raised doing a sponsored Fun Run for Post Pals! How amazing is it that these children thought about us and raised so much money! It was such a lovely afternoon despite the rain. We all had such a warm welcome from everybody, and we enjoyed a warm cup of coffee. The local press came and took a photo to go into the Herald Express. We were away on holiday when the story was printed but I had a lovely surprise on our return – Judith had sent me the photo that was taken and the newspaper cutting.

We also went away this weekend to Northern Ireland for my nephews wedding. My goodness me, the Irish certainly know how to party! The wedding was on Friday and we left the party on Sunday to fly home. Anna looked stunning. She went with her Aunty Myra to have her nails, make up and hair done. She was almost up to us, when Andrew said “Oh my goodness is that Anna-Mae?’. He was quiet emotional at just how beautiful she was. Anna’s letter will be posted soon, but because of school, it may take a little while.

I hope you are all OK and thank you for the post this month, especially to Julie and Jenn. Both Anna and Will enjoyed doing the word searches and the facts about the giraffe’s scarf are incredible!

Update 31st July 2008

Everything for Anna-Mae is going really well. She had a great end of term, and was actually quite sad to have so long off school. She has gained so much in confidence and self esteem over her last twelve months at school.

We went up to Bristol again a couple of weeks ago to see Anna-Mae’s specialist. He had to very gently remove her bridge to do some work and we all sat silent, holding our breath, as this was a very delicate procedure. Anna-Mae asked if she could look at herself in the mirror. Mr C. asked her if she was sure she wanted to see and Anna said yes. She stared long and hard, but said nothing. When we got back into the car, she said it was quite nice to see her real self, but was so glad she could have everything put back. Bless her! I was very proud of her acceptance of herself. We managed to find a hair salon that sold Afro Caribbean hair products. Her curls are beautifully tamed now too.

She went away on her riding holiday and was a little shocked – to say the least – of other peoples perception of her. Although she had a mixed week, I think she learnt an awful lot.

On Sunday she is going to an “Over the Wall” camp at Blanford Forum. She can’t wait. It sounds wonderful. I am hoping more than anything that she comes home bubbling about it.

Anna-Mae would like to type a few words herself:

I want to say thank you to every one who has sent me post, especially to Julie for the wrist band and Haley for her hand made cards. Thank you to everyone else too, I love getting mail. I get more mail than Mum and Dad.

I can’t wait to go to the over the wall camps because I am going to be with everyone who knows what it is like to have a disability. I am going to take my camera with me, so I can take some photos. I will send them to Viks so she can put them on the web site. I took my camera on the riding holiday but we weren’t allowed to take any photos. I don’t know why?

I have got to go now, as me and mummy are going for a bath. Then she is going to paint my toenails and I will do hers.

Night night,

Anna-Mae xxxxxxxxxxxx

Update 5th June 2008

Oh my goodness me, where is the year disappearing? It’s nearly Christmas again!

Anna-Mae is growing up so fast. I can see and hear such a big difference in her. She is such a lovely young lady. She has been asking me quite difficult questions over the last week or so, about her future. I’m not sure where they are coming from, but she seems happy with my answers, which are as honest as possible.

She has had a lovely month again. Her riding is coming along lovely. She had a jumping lesson, which apparently went very well. I left the stables with my heart in my throat. She wanted me to watch, but I just couldn’t bring myself to do it. I understand her hunger for achieving and acceptance, but I felt that I would hold her back by being there. My fears for her safety were too strong to allow me to be there. BUT, I do have a lovely photo of her jumping on Maddy. I take my hat off to her riding teacher, and Mary the owner of the stables, who are allowing her a say and empowering Anna to ‘have a go’. That’s what life is all about. I will go and watch her soon, but I’m frightened she will start to show off in front of me, or loose her concentration.

She has saved really hard over the last year to go away on a riding holiday on her own. We visited it last month to have a look before we decided (it’s a big step, allowing your precious and vulnerable child to step out into the world independently). She reached her goal last week, so we phoned and booked her in and paid her deposit. She is so excited about it. It sounds so lovely. There will be six girls sharing a dormitory. They will live and eat as part of the family in a beautiful thatched farm house. The girls all have to help to do small chores, such as collecting the eggs in form the chickens, and help with the other farm animals. It sort of felt quite old fashioned. I would have loved it when I was her age.  Both Will and Anna have gone back to school this week after being on holiday. What weather we had. It was lovely for the ducks, but it never stopped raining! We still managed to have a good and busy time though.

Thank you to everyone who has taken the time to e mail, or send post to both Anna and Will. They both love getting mail. Will was sent an egg that hatched a monster. Well if any of you could have seen how precious the egg was, it would have made you smile. We have decided he will become a very good dad one day! He changed the water daily and watched all the time to see his baby being born! Oh, the excitement when the lizard finally appeared. Thank you Kate and Maria for all Will’s mail.  Thank you to Kate for the lovely horsy postcard, Anna Mae really loved it. Thank you also to Jenn, your handmade cards are super, and also to Julie. I hope you enjoyed all your trips away. Anna had the funniest card from the Post Pal team; we were all in stitches with it. It was a cat with a hat and scarf on, but with googly boggly eyes. Thank you Hayley, Cara and Julie for the lovely long letters and thank you and hello to Jennifer for the e mails. Thank you to Emma, Berenice and Callum for the letter and lovely horsy sticker book, Anna-Mae was thrilled.

Thank you, thank you, thank you, to everyone who takes the time to give not just to my children, but all of the children on the Post Pals website, some of your precious time. I know I am speaking from every single heart of all the parents, grandparents and carers of all the wonderful children on the Post Pals site.

Update 6th May 2008

Anna-Mae has had another good month. She had a hospital appointment at Bristol where she saw a consultant she hasn’t seen for a while and all went well. It was a very positive meeting and she is looking forward to seeing him again in July. He is going to see what he can do cosmetically for Anna-Mae’s false teeth, as a couple of them have discoloured quite badly (turned black) and she is very aware of them.

She is going through a series of serial casting to both legs, at her own request, as she can’t get her heals down when riding the horses. She had to have a break last week as she had a crop of blisters on both legs/feet, but she will be back in plaster this week. It’s better to get it down before the summer arrives.

We have contacted Over the Wall about a place at summer camp for Anna and she is keeping everything crossed in the hope she gets a place. She has also been saving really hard to go away on a weeks live in riding holiday and she is almost at her goal, so she is putting pressure on us on a daily basis to book her in.

She has had some lovely post this month including a postcard from Julie in Perrenpoth – we hope you had a great time! We had some beautiful hand made cards from Karen, Chloe, Tina and others (she has taken all her post into school, so i’m sorry but i’m writing from memory!) and a fab riding book from Kim. The book has been read over and over, so thank you very much. Thank you to everyone else that i’ve missed, your mail is much appreciated.

Update 3rd April 2008

Anna-Mae has had another great month. The sun is shinning and all is well on the western front. She has been on school holidays for the last two weeks and has another two to go. She has been having riding lessons and is coming on so very well. I’m absolutely convinced that the riding is helping strengthen her core muscles. She hasn’t used her wheelchair once this holiday, although when we went to Castle Drogo for the Easter Egg hunt, she scrounged a lift back in the golf buggy. She said her legs were really tired, but we think she just fancied a ride in the unusual mode of transport, plus there was a hail storm and it was bitterly cold! We had to walk! Ugh!

Her cousin Lou finishes school today for her holiday and Anna is looking forward to spending time with her. They are both going for a riding lesson this eve at 7.30! Then on Sunday Anna has a sponsored swim for cancer research with a few members from her swimming squad.

On Monday we have to go up to Bristol to see a specialist that Anna hasn’t seen for some years. She adores him and is so looking forward to seeing him, although it’s an apprehensive time for Andrew and I. At least we may get some serious retail therapy time!

Thank you to everyone who has written to Anna. She really enjoys reading her mail. Thanks to Kate Dee, the Easter Bunny card was so sweet. Jenn’s card was very jazzy with the stars all over it. Pauline would have had a reply yesterday, but after Anna wrote her letter, we realized there was no address to post it to! Also to dear Elizabeth and Jack, thank you for your card. Julie Barrett sent Anna-Mae some lovely lip gloss. She loves sitting in the car applying it in the vanity mirror… very grown up!

I would like to say a special thank you to Erin F’s Grandparents. They have sent cards and messages to Charlie, Henry and William. Their words were very kind and I know Charlie and Henry especially appreciated the sentiments. It’s always nice to be acknowledged and appreciated!

Update 13th March 2008

Anna has had a lovely month. Her health is very good, and the hospital visits have been almost none, which makes such a difference to her spirit.

She continues to settle really well into school life. She has had a very large life changing episode over the last month, but it is of a personal nature, that could not be printed! She has coped extremely well with the massive hormone surge… but I haven’t!

Her riding is still the centre of life itself at the moment. Every moment of every day is filled with those girly thoughts of owning a pony. I keep telling her when my boat comes in! She had had a couple of private riding lessons and I was really impressed with her determination. She did struggle with getting her pony to move any faster than plod and this is when you can see how weak her legs are, so the next lesson she is riding the most beautiful pony called Little Blue, who jogs everywhere!

We have contacted Over the Wall project and are awaiting a form to apply for a place. She is really excited about the possibility of going and especially the fact that I can’t go with her! Bless her.
We flew over to N. Ireland on Saturday to have dinner with my brother and it was lovely. Anna loved telling everyone about the trip and the fact that she visited 3 different countries in 24 hours (Northern, Southern Ireland & UK) then we flew home on Sunday.

Anna had valentine’s cards by the bucket load last month! I was sooooo jealous! Anna has also had a couple of lovely letters this month. She loves getting letters. We really appreciate the post that arrives. Thank you to everyone who takes time out to think of our kids. The difference you all make is unimaginable.

Update 31st January 2008

We were all struck down with that awful tonsillitis bug last week, and we were getting worried that Anna-Mae’s scheduled surgery would be cancelled. Amazingly, she made a miraculous recovery (I feel sure the angels had a hand this) and Anna had her operation last Tuesday and she coped with it amazingly. All went very well. She enjoyed having girly duvet days afterwards. The only downside is that she can’t go swimming until after all the stitches have gone.

She has now found a best friend at school, thank goodness! This has been a very long time coming. She comes home everyday and tells me all the girly gossip. There are times I have to sit for hours listening. Bless her. She is so excited about it all. Today she arrived home to tell me she asked a boy out! Can you imagine the knots my tummy went into? I was very relieved when she told me he was thinking about it. It could have been a straight forward NO WAY! I wasn’t prepared for that phase of her life… not for years to come. I think that just proves her confidence is growing.

I think these delicate years, for any parent of special children are the most worrying. We want them to develop in all aspects of their precious lives, but are really frightened by the actions and reactions of their peer groups. Our children are ‘normal’, but just have ‘broken wings’. We want with all our hearts to protect them from any sort of hurt, emotional or physical, but we also realize we have to let them make risky moves, to enable them to grow.

Anna-Mae is now also into horses. She is having riding lessons and loves every minute of it. She was accepted at a local pony club, amazingly! They are brilliant with her and she is treated just like one of the girls. She arrives at the stables at 10 am and stays for 3 hours. They have to groom their ponies, tack up and hack or have a lesson. She has to muck out the stable and fill the hay net. It would be so easy for someone to take over and do her chores for her, but NO! She has to do it all. Sometimes the girls work in pairs, and if it’s her turn to carry the water bucket across the yard then so be it. She usually comes home with one very wet leg, but her self worth and sense of accomplishment is amazing. I love seeing her so happy and growing in every sense of the word.

Anna- Mae had a Christmas card on Tuesday from Nicole. I think it must have been lost in the post. Anna-Mae thought she was very early!

Update 6th January 2008

We are living away from home at the moment as Andrew had to have major surgery on 19th December. He is unable to get home for the time being and we think it may be a couple of months before he does.

Even though we had an unsettled time, we as a family had a wonderful Christmas, and everyone was thoroughly spoiled. The elves were exceptionally busy this year! Many heartfelt thanks to them all, especially the naughty elf, that sent the very naughty chocolate fountain!! A huge (in every way) hit with all 6 of us!!

Wishing you, the Post Pals team and everyone who takes 5 minutes to write to our very special children, a very warm, healthy and prosperous 2008.

Update 2nd October 2007

Anna-Mae did exceptionally well at the swimming presentation evening. She won 7 large trophies, 7 small trophies and 3 gold medals. She looked beautiful and we all thoroughly enjoyed the evening.

Anna’s mobility has deteriorated again and she is due to go into serial plasters next monday. The hospital suggested half term, but she hated the thought of it interfering with her holidays. At least she is pleased about it being in term time! School is going brilliantly. She absolutely loves it. The lady the school took on as her 1 2 1 had to leave again, which gutted Anna, but they have found a very nice lady to replace her.

We are going to York at half term, to visit the Jorvic Centre. We are all looking forward to that. It should be very interesting.

Thank you to everyone who has taken the time to send mail to Anna and Will. All mail is so gratefully received. There is a letter waiting for her today all the way from Orland Park, Il, USA.

PS. A very big and special thank you to the post pals team, for the beautiful box of chocolates. It was really appreciated.

Update 1st September 2007

Anna Mae remains totally into her swimming and continues to do really well. We have a presentation evening on September 15th and she eagerly waits to see if she has won anything.

We had a swimming gala at the beginning of our recent holiday, where Anna Mae took part in every race she was eligible for, and won in every one. The last race was a 4 x 25m individual medley and Anna Mae beat her personal best. She put her heart and soul into it and ended up hyper ventilating! Last week she put her name down for the long distance swimming gala and has put her name down for five races – the only thing is that they are all 8 lengths of the pool each. I joked to her swimming coach that we may need oxygen this time!! I take my hat off to her determination.

Unfortunately, Anna-Mae has had to give up dancing, because her legs and balance have deteriorated and it made it very difficult for her both emotionally and physically as she felt she was failing. She is now heavily into horses/ponies though and loves everything about them. Nanny recently bought her two new books, Mystic and the Midnight Ride and Blaze and the Dark Rider, which I think are part of a series of books.

We have had a great holiday this year spending 2 weeks in Brittany, where the weather wasn’t brilliant but we had a few sunny days. All the children were begging us not to look round any more forts! Then we went to Sennen Cove in Cornwall where the children spent 3 days in the sea! From there we went to a Jazz festival where we camped for 2 nights and as per most music festivals, it teemed down with rain, but a great time was had by all. From there it was off to Scotland, where the Edinburgh Tattoo had us all totally mesmerised. This week, we have Harvey, Anna Mae’s 12 month old cousin. Anna insisted on having Harvey in her room and it made me giggle when at 2 o’clock this morning I found all four of my children trying to shush a screaming baby and not wake us up!

Anna Mae has had a difficult time this summer health wise as she has cut a tooth which is pushing its way through her nose. Her Doctor has said it’s best to leave it to come through a little bit further, if she can stand the pain which will make removing it easier. Otherwise it means digging down through the tumours and causing them trauma. We are waiting to see a specialist in Plymouth regarding her legs, but I think they are becoming painful as she is growing. We have taken delivery of her new wheelchair which is very grown up with racing wheels and a low back. She is now saving hard to buy herself a pair of wheelchair gloves as she keeps burning her hands on her wheels!

Anna Mae is going to her new school next Wednesday and it just can’t come quick enough for her, she is so excited. We are going into town shortly, to get her school stationery. I’d better warn the bank manager!!

Thanks this month to Kate D and to Julie Barrett who sent me the Pinkie gift set. Thank you to Nicole D, I will be writing back shortly. Thank you also to Emilia, I loved reading your letter and will write back soon. I’ve had lots of lovely gifts this month, I especially love the beautiful teddy bear that was waiting for me when I got back from holiday, his name is Tefur which means “T” for teddy!
Hope you are well, thank you for everything.

Update 2nd July 2007

Anna-Mae spent a week at her new school in preparation for September. She really enjoyed her time there and was very sad when Friday came. She has made some new friends and now can’t wait for September to come. She looked so grown up in her new uniform.

She is waiting for a consultant’s appointment to see about her legs. They seem much weaker and more painful than they have been in a long time. I hope we can get her sorted before we go on holiday to Brittany in 3 weeks time.

Anna-Mae continues to do well, although her dancing has come to an abrupt halt, as her legs aren’t quite working as well as they have been. She has spent a month in casts to lengthen her tendons, which has been quite successful, but she still remains stiff and sore.

She has joined the Rookies life saving course and continues to flourish in the swimming department. She has entered herself into six races for next Saturday, but because she is 11 now, she has to do 50 metres. I did try telling her, but like most 11 year olds, she knows best!

Thank you for her post. Anna loved the cat poem and thank you for the dancing cat card Viks (honorary cousin).

Update 12th May 2007

I (Anna Mae’s Mum) have received a parcel in the post this morning from the Post Pal Team, a fabulous pot of iced coconut sweets. How wonderful!! I never receive anything nice… only ever bills! I feel very special! I know the rush the kids get now when the posty arrives. Even the postman made a comment!

Please accept or give my heartfelt thanks to the mystery parcel sender. It has made my week… let alone my day!!

Update 29th April 2007

We have some brilliant news! We all went along to the Langstone cliff hotel in Dawlish last Friday night for the Teignbridge Sports personality of the year awards. Anna-Mae looked beautiful in her baby blue dress, sparkly white cardigan and both legs in plaster!! Everyone was totally bowled away when Mark Tyler from ITV announced in reverse order who had won! Anna-Mae! Andrew and I both cried. She was so proud and rightly so!

Thank you to Post Pals for the beautiful lights for Anna-Mae’s bedroom. We are in the process of decorating her room at the moment and she is patiently waiting for them to be put up. Well, patient in Anna-Mae’s world!!

Update 10th March 2007

Anna has had a couple of letters and cards from Julie Barrett and Alan, with some yummy little pressies that Anna Mae treasures. She also had a delicious lollipop lip gloss and card. Kate Dee frequently sends Will a card and note, which he loves receiving.

I do feel that we should remove Charlie and Henry from the list now as they are almost men. Nearly 18!! Scary!! Thank you to everyone who has taken the time to write to them and send them gifts. They have been spoilt rotten and we all really appreciate people’s kindness.

Anna Mae has been nominated for sports person of the year for her achievements in swimming. She also passed the exam to get into her first choice of school.

Update 12th February 2007

Anna-Mae remains very well and blossoming at the moment. I am so proud to be her Mum. She really is such an inspiration to us all, with her positive outlook and attitude towards life. LONG MAY IT LAST!

Anna-Mae has been incredibly busy over the last few weeks. She was asked along a few of her friends from ‘The Dance Mill’ to dance for the opening of the X Factor show, which she did last night. It was all very exciting and she had the treat of having a photo shoot with Phillip McGee, an X factor finalist and Chenai, as well as Eaton Road. We took Tory along to support her best friend Anna. Tory thought Anna was the best dancer on stage! Bless… we could all do with best friends like Tory!

Thank you to everyone who sends Anna-Mae mail. She loves getting letters and replying to them… providing there is a forwarding address and time allowing. She really does try her best. Special thanks to Viks, she really spoilt Anna-Mae and Will. Thank you also for the delicious pressie included for Andrew and me too!! Anna-Mae also had a very special parcel from Jackie in Sandhurst (two Tracey Beaker CD’s) and she listens to them every night at bedtime. I can hear her talking along to the cd’s now. Children really amaze me at just how retentive their memories are. How I wish I could have remembered Shakespeare or Keats like that!

Update 3rd January 2007

Thank you to everyone! Anna-Mae had lots of wonderful cards from people this Christmas; she even had cards from Dasher, Dancer, Prancer and Blitzen, Comit and Cupid and Donner and Vixen. Can you ever imagine the excitement? And Rudolph sent the most amazing card with a flashing nose! It must have been a magical card as his light is becoming very weak now Christmas is over.

A secret elf sent Anna-Mae the most wonderful gifts. Her most favorite present of all she received was a lifelike chimp that asks for cuddles. I think that she needed that, and has now got a new purpose in life… to cuddle her chimp and boss us all about, trying to teach me parenting skills! Apparently my way is totally wrong!!

Anna-Mae has taken to reading lots and lots of books in her bed. She is working her way through an Edith Blighton compendium at the moment, as well as Jiggy McCue! She is also growing up and her girlie ways are forming, such as make-up, bath bombs and face packs. She loves her toe nails to be painted etc.

We had quite a stormy year last year with one thing and another, the death of my mother, good friendships separating, etc. This all knocked Anna-Mae’s confidence and so her abilities, but she is a fighter and she is now fighting back. Anna-Mae has seemed a bit better in herself over the last week or so, as have we all. We all love and miss granny like mad, but we are talking about her daily and in fun. It’s good to see her old self back, and it’s good she has dealt with life’s knocks and moved forwards in the right direction. I feel sure 2007 is going to be a great year for us all. HAPPY NEW YEAR TO YOU ALL!!

Update 1st December 2006

We as a family have had a very bad time this Autumn with my mums “Grannies” cancer, and her death on the twin’s birthday. It has hit us all hard, and we are all reacting in different ways. Anna-Mae has had everything wrong with her and aches and pains daily. I think she is feeling sad and empty and that she is having difficulty putting her feelings into words.

On a brighter note, she has had her new teeth fitted and she has the most wonderful cheeky smile! She is so proud of her new look! Anna-Mae and Will have taken up making cards. Anna-Mae had the most wonderful selection of cards from the card Rakers forum, that she decided she wanted to have a go. It’s lovely that they have found something they can sit and do together on equal terms!

Have a wonderful Christmas!

Update 30th August 2006

Anna-Mae keeps getting regular post, postcards, small packets etc. Even the postman knows when the mail is from Post Pals! He was very interested to hear all about it and she feels so excited when he arrives! We all crowd around her to see her open her mail. Sometimes she rips open her mail, other times she peels it open slowly and when everyone’s excitement spills over she then decides to take the package to the privacy of her bedroom, leaving us all waiting. How terrible is that! William is especially driven mad, and can get quite bolshy! She knows how to play the boys up!!

Anna-Mae has had a great summer. The time has flown by. I can’t believe that the children are all back to school next week- I don’t feel ready. Her health has been very good and everything is very upbeat. It’s great when life chugs along like that.

Her specialist is attempting to make her a special set of teeth. They will not be removable this time. They have to cast them in 24 carat gold, so the metal is soft enough to move and bend with the growing tumours. She is so excited at the thought of them. Fingers crossed.

Sleepwalking has become an issue over the last couple of weeks. She frightens me half to death as she wanders around the house, and we do have the most confusing conversations! I have never dealt with sleepwalking so this is all a little weird to me.

Take care everyone and heartfelt thanks for all the joy and laughter the project brings into our house.

Update 8th May 2006

Anna-Mae has been awarded a place at the school we wanted her to go to as a day girl from September 07. We were totally amazed that the place was granted- just like that. We compiled a full and comprehensive document about Anna-Mae’s conditions and all of her consultants/ Dr’s and anyone she has contact with wrote letters confirming the problems that she will face. We were told that it was going to be a long hard battle, but, Education was so good and understanding, and they confirmed that she can go. Hooray!!!! Anna-Mae is so over the moon, as we all are. Any parent that faces the same dilemma please don’t worry too much, as it’s not as bad as you may think (like I did, many sleepless nights and tears. All wasted!!).

I would also like to thank you all for the lovely presents and cards that you have sent to Anna-Mae for her birthday. She had a beautiful bear all the way from Florida. He has been called Itsy and he is joining us on our holiday. Lucky bear!! We have let her open them as they have come in, as we are going to Egypt for her birthday. She has got an underwater camera, so maybe… just maybe, we might see Nemo.

Everyone, with the exception of me, are so excited. I hate flying! It’s not natural! My tummy has been in knots for days now. I am looking forward to relaxing by the pool with a good book though. We are going with Anna-Mae’s best friend in the whole wide world, Tory. I am a little worried about going so far with Anna-Mae – just in case. My husband must have got me to agree at a weak moment! I usually opt for camping in Cornwall. I feel safe there, just in case we need a hospital!! BUT, Anna-Mae has been really, really well over the last few months.

Update 12th February 2006

Just to let you all know that things are all good here in Devon with us. We had such a magical Christmas and New Year. Thank you to everyone who sent fantastic letters, cards and presents. The elves were especially busy! She also had daily cards from the reindeers, telling her what was going on. You should have all been here to share in the excitement! I loved it too! She also had some cards from a school in Japan. The cards and writing was beautiful.

Anna-Mae had a period where she was really under the weather. I think the cold weather had a hard hitting effect on her mobility, which really knocked her confidence. She has also been through a period where she seemed to be bearing the brunt of others, unkind words etc.

Andrew, Karen (honorary special auntie) and I have been overwhelmed collecting information, writing letters and compiling reports for Anna-Mae’s school review, which was today. I have been dreading it, but it was in fact a very positive meeting. Not what I expected! We are trying to get her into a small independent day school (350 pupils) as opposed to our local comprehensive (1800 pupils). Mainly our reasons are for the safety and gentile ways, as well there being a nurse on site to help her with her continence needs. I will let you all know in due course. Fingers and toes crossed please!

In general news she has been moved up in her swimming class, and she is thrilled to say the least. We are also going to see her dance in a big show at the end of March and beginning of April. It’s all done very professionally!

Update 8th February 2006

I made an early trip into town today to go and get some valentines cards. Anna-Mae is worrying that she won’t get any this year again, but on our return from school, there was a beautiful card waiting for her from a lady called Elizabeth. Anna-Mae was so touched; it now has pride of place on the windowsill, facing out for all to see!

Update 17th September 2005

That is such a lovely idea, the peppers. Anna-Mae was really pleased with it. We have printed it off and she has just gone into town with Charlie to buy a frame. It is going to take pride of place above her bed.

Whilst I am writing a few lines, I would just like to take a moment to say a really huge and heartfelt “THANKS” to everyone who has written to her, and to Charlie and Henry. We are all really touched by human kindness.

On the whole Anna-Mae has a really good summer. We are all so proud of her strength, courage and determination. Although she is a little feisty at times! She recently won 4 bronze medals for swimming in her first gala, as well a very large trophy, with the inscription ” the Sunshine Trophy for the most determined swimmer”. All of our hearts swelled with pride, I can tell you. She has a remarkable outlook on life and all the obstacles that it throws at her.

She had a blue period a few weeks ago, after retuning to school. She had chosen to stay with the teacher she had last year, as she adores this teacher, and the teacher has done so much for Anna-Mae’s self esteem and confidence, as well as the classroom being adapted to accommodate equipment etc, but she hadn’t really thought about all of her class moving on. I think this dramatic change hit her full face on, but she is settling down well now. She announced at tea time through the week that she has thought about the situation and has decided that class times are for learning and playtimes are for seeing her friends. I do wonder where she gets this mature way of thinking from at times!

She did receive a parcel, through Post Pals, from ‘online angels’. It really was the most amazing gift ever. A patchwork quilt that had been hand made. Truly beautiful and so precious. She made me promise it would never go into the washing machine! (Says a lot for my laundry skills) But sadly we can’t find them on the internet to say Thank you. So… she believes that real angels have made and sent her the gifts, as if they were real people, we would be able to find them.  Anyhow, I must sign off for now, and carry on with the boring chores that Saturdays bring. Thank you ‘ALL’ once again.

Update 30th July 2005

Thank you for the e mails, Anna-Mae can’t believe peoples kindness. We have just returned from a short break to Butlins, and there were 11 messages waiting for her. She really is so excited about Post Pals.

Story written 2011

Faith was born blind and severely epileptic. She had brain surgery when she was one to remove the focal point of the brain where the neurologists felt the epilepsy was originating from. Sadly they couldn’t remove it as it was on both left and right hemispheres of the brain.

Faith was able to sit but as her epilepsy worsened she is now totally immobile and in a wheelchair. Her bones are fragile and crumbling and she is due to have a big hip operation in September 2011 as her femur is not formed properly and her hip ball and socket joint is malformed.

Faith has a pulse generator in her chest with electrical currents constantly pulsating through a copper coil wrapped around her vagus nerve to try and control some of the seizures. Faith is highly medicated and is in a body brace and is fed by gastrostomy. She is non-verbal and her comprehension is limited.

However, Faith is our beautiful angel. She is accepting and sweet. She listens to voices and her eyes sparkle when she is content. She loves cuddles, being sung to and having her hands and feet massaged

Update 18th November 2024

Update 31st of July 2023

Faith has just come home after a week in intensive care.

Update 30th October 2022

Faith still loving facials and foot massages. She has recently enjoyed moisturizing foot socks that you leave on for 20 minutes then massage her feet! Bliss for her. Such a sensory experience. 

Faith loves outside daily walks in her chair and gentle chest physio stretches to help her breathing. Loves Halloween and the whole build up to Christmas. The music. Decorations. Everything!  

Update 30th October 2021

Faith is doing well. Always her epilepsy is an issue however this does not stop her from doing things. Even though it can wipe her out for hours.

She is thoroughly enjoying wheelchair yoga the hydrotherapy pool, bath bombs which she loves, loads of facial massages face masks foot masks – one big spa day. She is certainly the princess of Spa!

She is currently busy making Halloween decorations for her room. Any sensation for her hands and feet she enjoys. 

Update 26th March 2021

Faith has been shielding and will continue to do so until the end of March, when she will then be able to go into her class of 6. It is all very exciting! She has thoroughly enjoyed her song time and story time through school zooming and loving her foot massages and bath bombs, what more can a girl want!

Update 6th February 2021

Faith is still self isolating. Enjoying lots of sensory stimulation, such as foot spa, bath bombs, hand massages and enjoying the different voices on audio books. She has had her first vaccine, thank goodness, but she suffered for 3 days after. ☹️ Faith has a new cpap mask as the old design was cutting into her nose.We are all pleased with it😊. Anything to help 💤 sleep. Mae is studying hard on-line schooling and cooking lots in the kitchen and making a load of mess to go with it!. Thank you everyone.

Update 21st August 2020

Faith is doing very well at the moment. Faith recently had her front tooth come out luckily the one behind it has filled the gap! She certainly suffered sore gums, but feels good now. 

Update 2nd September 2019

Mae had good GCSE results and is going to be in the sixth form studying A levels. Faith has thoroughly enjoyed being in the shade in the garden on sunny days.

Update 10th August 2019

Thank you to Claudia Meyer for being such a regular Post Pal to Faith and Mae. Lorayne your last post was epic! And your writing so beautiful. Thanks always to Debra and your super monthly boxes. Faith and Mae love them! And to all the post cards/cards from around the world!!!!!!!

Faith has been doing lots of pampering lately. Face masks, nails, exfoliation. You name it, she has been pampering! Mae dip dyed her hair red for the summer as school is out. Been baking and joining in with Faith pampering herself too and camping in the garden with friends.

Update 21st March 2019

Faith went through a blip of horrid seizures, but the last week she has been under better control. She is loving being on the peanut ball – it is freedom from being in the wheelchair! Thank you to everyone for their special cards and gifts. Xxx

Mae is busy revising for  GCSE’s it is such a tough time and she is exhausted.

Update 10th February 2019

Faith’s really enjoyed Chinese New Year at school – smelling five spices, ginger and everything sensory! And has a new Cpap mask that doesn’t rub her face any more when she is wearing it at night, which is great as she sleeps longer. Mae studying for her mock GCSE’s and then the real ones. Not easy. She burns incense while studying. The house smells amazing !

Thank you to everyone who has sent wonderful cards and gifts. Debra, Claudia, Loraine …… You’re all so wonderful, making us all very happy and so excited to get the post x

Update 2nd November 2018

Faith is still struggling with  hip pain. X-rays don’t show any stress fracture which is a relief! The consultant suggested a new moulded chair should help. Thank you for all the amazing cards and kind words and gifts for Faith and Mae. They are so appreciated

Update 10th September 2018

Faith has been enjoying the sea air a lot recently, as we have been visiting the beach a lot. Nothing like fresh air to blow the cobwebs out! Faith has been admitted to hospital because of a chest infection but she is out now. She is struggling with hip pain too. So the OT and physios are working with Faith.  She will be 17 in September, so a massive achievement. What an amazing person she is.

Mae has another hamster to replace her old hamster. It’s a boy! Haven’t had boy hamsters before. An animal is a great way to help her relax. Mae has been baking and making her favourite stir fry.  They’re both now back at school.

Update 26th February 2018

Well Faith is putting on weight, which is good, but her seizures are so unpredictable still, which gives her headaches. Her skin is so sensitive at the minute and fragile, so we have to use gentle creams and bath creams on her, but she is as lovely as ever!

Update 16th October 2017

Faith had a great birthday, 16! Cannot believe it!  Thank you for all the great birthday cards from all around the world! Faith has been enjoying the sensation of  baking chocolate brownies with her sister Mae. The smell of chocolate. Yum! Faith and Mae have been enjoying  foot spas and foot creams together.  Messy but super fun!

Update 24th August 2017

Faith has had a busy summer going to the zoo, shopping, bowling ,baking and in the garden!   Thank you so much 😊 for all the cards from England and around the world

Update 17th November 2016

Faith’s seizures are more frequent and we are keeping her away from anyone with any sign of a cold. Let’s just get through the winter!

Also a thank you to Celia B, Kaiso Gee, Claudia, Bev and everyone who sent a wonderful card/letter to Faith. Soo amazing you all are. Please can people leave their emails so we can thank them. x

Update 2nd October 2016

Faith has a cold and sneezing. We are nurturing her to make sure it is only a cold.
Mae is getting super excited about Halloween. Hmmmm. Spooky. Faith loves to dress up as a witch and scare anyone who comes trick or treating at the door.

Update 6th September 2016

Faith is almost 15. We cannot believe it! How wonderful this is. What a difficult year it has been and we are so excited to see her reach 15.

Thank you to everyone sending postcards, letters and gifts. So special, thoughtful and kind. We all really appreciate it and can’t wait for our postman to come everyday. It helps us get through everything.

Update 8th August 2016

Thank you Bev Higgins, Claudia Meyer, Hazel and Steve and all the super people who send incredible cards and best wishes! Faith and Mae think you are awesome.

Update 7th July 2016

Faith is putting on weight which is fantastic. Always trying to help her control her breathing – especially at night – and back pain. Nothing like a massage to relax her.

Update 2nd April 2016

Update 5th March 2016

Just wanted to add in a massive thank you to Mr Moore for Mae’s fabulous books! Faith is gradually phasing in school starting with 2 hours on Friday!

Update 3rd March 2016

Faith is doing well considering what she has been through. Her breathing is so difficult and the respiratory consultants are working on a plan for a bipap cpap and nasal oxygen, as she is thoroughly exhausted just breathing!.

Mae is enjoying baking, she made strawberry muffins recently and she ate them all before we got a look in! She also loves all 5 of her hamsters! Thank you for all the wonderful cards and letters of support. Please can everyone put their email address on their parcels so we can thank them!

Update 7th February 2016

Last Saturday they moved Faith onto a portable ventilator, 3 PICU nurses and a consultant wheeled Faith in a hospital bed outdoors and along to Big Ben. Faith’s family cut a cake decorated by Mae and toasted Faith as Big Ben chimed, before returning to PICU. They surrounded Faith with pink heart balloons, handmade heart confetti and said their goodbyes. Faith was taken off the ventilator and was expected to have between a few hours and a day.

Faith has now been off the vent for 8 days and is still fighting on. She has been moved out of PICU and to a palliative care bed. The doctors said if she survives this weekend then they will discuss discharging her to the school, where she normally boards weekdays.

Faith is by no means better, she is struggling to breathe, is in seizure activity 85% of the time and only occasionally opens her eyes. They  have now stopped doing any monitoring or interventions. The boarding school (which has highly trained nurses at all times) would be a better environment for her to spend her final time, however long that might be, and its closer to home for her family.

Update 26th January 2016

Faith has now been in hospital for a month and it’s become clear that her little lungs have given up. It has been decided that her quality of life has deteriorated in the past year. On Saturday Faith is going to be taken off the ventilator, given relaxing medication and let her slip away peacefully with her family around her.

Update 11th January 2016

Faith was admitted to hospital on Boxing Day with a chest infection. Her airways kept collapsing and she had to be moved to PICU and put on a ventilator. Faith remains incredibly unwell, although she opened her eyes briefly today.

Update 3rd January 2016

Faith was admitted to hospital on Boxing Day and then again 2 days after, we are still here as Faith is suffering with a chest infection. Faith is on steroids and IV antibiotics for her poor chest. We will need overnight stays to do testing again, as her consultant really wants to review her, because her airways are collapsing. Thank you to everyone who sent lovely cards and messages, they really cheered Faith and all of us up. Faith has thoroughly enjoyed the lip balms as her mouth/ lips dry easily and the oxygen dries them even quicker.

Mae loved the gifts for her hamsters and cheeky puppy Rosy.  Thank you.

Update 4th December 2015

Both girls thoroughly enjoying playing with Rosy our new puppy. Rosy loves sitting curled up on Faith’s lap and it keeps Faith warm too!

Update 2nd November 2015

Faith now needs to be nebulised twice a day and needs constant suctioning as her lungs are not functioning very well. She still puts a brave face on everyday, even though she struggles to breathe.

Update 4th August 2015

A massive thanks to Skye from Australia this month for the vegimite chocolate! Spectacular! It was yummy and is all gone. Hopefully she received our thank you emails and her animated cards too.

Faith has been amazing this week considering she has just been in hospital for over a week with her uncontrollable seizures and then chest infection.

I hope everyone is having a good summer.

Update 4th July 2015

Faith went in to hospital for a jejunostomy (stomach tube) and more bisphosphonate infusions (3 times 5 hour ones) for her osteoporosis. It is difficult for her as she suffers with general anaesthetics and gets a fever with the infusions, so we all hope she feels more comfortable very soon.

Thank you for Faith’s lovely paper cut gift through Post Pals. We had a fabulous time at the annual party last weekend too!

Update 31st May 2015

Faith continues to smile, so we are really delighted and trying to take photos all the time to catch them. Faith is thoroughly enjoying her baths and painting her nails. Soooooo girly. Mae helps too and is a great sister looking out for Faith and when she needs suctioning, she helps do it too! Faith still needs loads of suctioning all through the day and night. It keeps us very busy, especially the 2 washing machines which do at least 4 loads each a day!

Mae went on a day trip to France with school up to a light house, ate lots of chocolate, then came home again! I think she practised her French. Both girls are enjoying baking cakes (anything with chocolate) and making smoothies. They are also addicted to Britain’s Got Talent and we are all enjoying watching it together.

Thank you to Claudia for your updates on cute little Ella! She is soooo gorgeous. A massive thank you to Skye in Australia for the slide cards you sent with the animal sounds. So clever and a brilliant gift. Thank you everyone for being so lovely, kind and positive.

Post Pals is a fantastic part of our life and we all feel happier for being a part of it. We really do feel lucky.

Update 1st May 2015

Faith is still smiling and we have had three chuckles now! This is the best thing ever! They are quiet chuckles, but it still counts and we are all thrilled and so happy for her.

Faith made meringues at school and played with some Angel Delight again (strawberry is her favourite smell). Last weekend she had her toe nails painted all colours of the rainbow and her hair plaited and sparkly clips put in. She looked a fabulous teenager. Although I would say that as I am her mum!

Faith is due to have an operation in July on her stomach. We are waiting for more details. Five days in hospital. No one is looking forward to it, especially Faith.

Mae is all examed out. She said she needed lots of chocolate to help her revise. Any excuse! She had her hair coloured pink at the end – a lovely kind Post Pal sent a box of sachets to dip and dye your hair. We did accidentally get it over Mae’s clothes – but it all came out in the wash.

Faith got a lovely nail varnish  from a Post Pal this month, thank you. Thanks also go to Ligang from China for the owl necklace and to Baoshiji  from Shenzhen China for the owl purse.

Update 13th April 2015

Now she is a teenager, Faith is really into having her hair done, accessorising with bows, clips and plaits. She loves having her nails painted – rainbow toe nails are in at the moment! We eventually got around to buying a tangle tamer. They are the best! No more bed hair in the morning. Faith is smiling, especially when the bubbles (spa bit of her bath) is switched on. We have been busily taking photos of these absolutely magical and golden moments.

Mae is busy growing taller! She is really into unicorns and now back into My Little Pony series. I always say, you are never to old to watch 4 hours of My Little Pony on tv! I have to stop her otherwise she would get square eyes. Mae enjoys chasing the chickens around the garden and helping collect their eggs. We love eating boiled eggs!

Update 4th April 2015

Faith has been using the suction machine a lot recently, but wonderfully this hasn’t stopped her smiling. Faith has been smiling the past 4 months now (a big gap before then of 8 years when we had the last proper smiles) and last night Faith actually giggled. We almost caught it on camera. A wonderful golden moment for Keith and I. Mae was asleep in bed at the time.

We are all making chocolates at the moment – melting chocolate so the house will smell great over the Easter Weekend.

A big thank you to Caitlin in Shropshire for the wonderful CDs you send, the soft cuddly dog and audio story book. Faith loves holding the dog in her hand and we have all listened to the audio story book and CDs many times. Thank you Caitlin! Thank you Marioh Erdelkalup from Germany!! I hope we have spelt your name correctly. Thank you to Claudia, Jens and Ella, for your Easter gifts! Thank you Post Pals from Faith and Mae for the Easter card and yummy Easter Egg.

Update 3rd March 2015

Faith has just about got over her pneumonia. We’re still suctioning a lot but really improved. Faith is just starting to get some fresh air – wrapping up well and getting the sun spot in the garden! She loves listening to the birds and especially our chickens clucking (and Mae chatting of course).

Thanks Becky Butler for the super book. Mae ripped open the package and has had her head stuck in the book all evening. Hiya lovely Claudia Meyer. Ella looks soooo lovely and growing up beautifully. Mae loved the owl cut out. She (the owl that is) is sitting happily on our window ledge. Thank you from Faith for all the caring and colourful letters and lovely messages. She loves having them read out to her from all over the country and world. Thank you to Caroline for the rucksack, hair bands, cool pack and book too.

Update 26th January 2015

Faith was due to have Biphosphonate infusions at the Evelina for her osteoporosis but we had to cancel them as she was ambulanced to hospital with unmanageable siesures and put on iv epilepsy drugs, as her ones and other emergency drugs administered at home weren’t getting her out of her seizuring.

By chance they did a chest x-ray and found she has another chest infection, so it’s iv antibiotics. Poor Faith, she is really going through it, especially as her veins constantly collapse and so it was a miracle they managed to get a line in.

Faith has just come home and is on a course of strong antibiotics through her peg. She’s sleepy but on the right track.

Mae and the hamsters are glad to have Faith back as Mae gets very stressed seeing Faith unwell. Keith’s ‘man cough’ is also recovering and all is hopefully settling down now.

Thank you to everyone for their hamster cards, lovely messages and postcards. Thank you Claudia and Becky Butler (please can we have your email). You really make our family life better through your kind thoughts and cheerful messages. Thank you again.

Update 11th January 2015

Faith going into hospital for 4 days for iv biphosphonates as she is severely osteoporotic and hopefully this course will help her get some more strength in her bones. Her hip and leg have turned out recently so we are seeing the consultant and possibly more x-rays.

Faith has finally recovered from her chest infection starting in October. She has had some smiles over the past 2 weeks and we are loving it as it is so rare. Faith loves massages of her legs and feet with creams  – she gets great pleasure from touch.

Mae is getting used to secondary school and lots of nice friends. Mae’s hamster (Popcorn) very sadly died at Christmas time and Mae was devestated so we bought two little dwarf russian hamsters called Yin and Yang. We now have a Syrian called Violet and the 2 little ones. So sweet and fluffy and all very busy on the wheels at night! I think we need to get the free standing ones so we can get to sleep. Mae loves her animals. Faith enjoys feeling their fur too.

Thank you everyone for the spectacular Christmas cards you sent and their special messages from England, Australia, Korea. Amazing! Thank you for your gifts and cards Rebecca Butler! Mae loves the pencil case and the heat up owl – she is definitely going to school with the pencil case this week. Please can you send us your email and address again as we have lost it! Thank you to Becky Rideout for Faith’s cd too as we have listened to it lots of times. Please can we have your email and address too Becky! And lastly, hiya Claudia! Hiya to Hazel and Bev too!

Update 29th November 2014

Faith has just recovered from a chest infection. We were in hospital for chest x-rays but all is okay now. Phew.

We are very excited for Christmas. We have the advent calendars at the ready! We will attempt to bake a gingerbread house next week! Could be interesting and messy.

Thank you for the post recently. We got fab Christmas stickers from Kirstie, thanks!! Thank you to Regina from Switzerland for the super soft and fluffy neck scarf, it is so perfect to keep Faith warm on chilly days. Thank you Bev for the parcel for the girls! I have just got it and will hold on to it until tomorrow! It’s super exciting and beautifully decorated with stickers. Thank you to Claudia for Mae’s Christmas calendar card, she loooooves it!

Update 1st October 2014

Faith is enjoying baking cakes at school and listening to the British Bake Off on television with her sister. The family are addicted to making our own chocolate chip cookies at the moment. Faith sampling the melted chocolate of course! Mae helping at any opportunity to sample as much chocolate as possible too!

Faith has also been enjoying walks out with her wheelchair, crunching over the autumn leaves (and dodging dog poop!) and loving being a teenager!

Update 4th September 2014

This is a very exciting month for Faith. She becomes a teenager! Thirteen on the 13th September. Faith went on the London Eye and a London Thames Cruise for an early birthday trip with the family. She loved all the sounds and wind in her face. Very windy on the Thames! Mum will try and make a London Eye cake for her birthday – try is the word.

Faith has enjoyed the last few days of summer holiday going for walks in her wheelchair to the local parks and lakes with her sister Mae. We saw some ducks today and lots of friendly dogs. We always have to stop and stroke them.

Update 29th July 2014

Faith has finished another year in secondary school, it was a wonderful celebration day and a certificate was awarded to Faith for her good communication skills with the school ipad! Well done Faith.

She has been pampered thoroughly so far this summer holiday – nails and fingers painted lilac, and her hair in plaits, bunches and amazing styles. Well, she is nearly 13!

Mae has been swimming and in the paddling pool in the garden, playing with her build a bear and styling Faith’s hair. Oh and of course, the compulsory lounging around in your pj’s for as long as you can while watching tv!

Update 3rd April 2014

Faith is doing well at the moment. She’s still struggling with managing her seizures though. Lots of new meds are being tried to try and prevent Faith getting stuck in her seizures.

Faith is now only just tolerating her feed properly after her spinal surgery back in November. Horrid reflux and not taking in enough fluids meant she was over heating. We have been very gradually increasing it so she doesn’t gag too much. Otherwise it is projectile milk everywhere!

Faith has been very productive at school making a paper Easter chick basket, a fluffy tailed Easter bunny poster, and planting seeds. Faith loves to cook with chocolate (loves the warm smell of chocolate melting) and the feel of it in her fingers. Anything messy really! All tactile. She is having hydrotherapy at school which gives her the freedom to move easily in lovely hot water, it is so good helping her muscles relax. A real mermaid floating around.

Faith and Mae will have an Easter egg hunt around the garden, although they know all the good hiding places. Nothing like being outside for a bit of fresh air as it blows the cobwebs out. We will also be making some Easter chocolate lollies – again, melting chocolate!!

Mae is keen on hamsters (as she is a very responsible owner of her hamster, Popcorn) and at the moment is interested in (addicted to)  McDonalds monopoly stickers.

Update 3rd November 2013

Faith’s surgery was canceled after we had left for the hospital. She will now have it this week.

Update 22nd August 2013

Faith will be going into the Evelina hospital for her surgery on Wednesday 2nd October 2013 to have her spinal surgery on Thursday 3rd October. She will aim to be in the Evelina until Monday 7th October provided she doesn’t have any lung complications as with her previous operation.

Update 2nd May 2013

Faith is having another spinal surgery and it should happen within the next 12 weeks. She is having some bolts cut off /shaved and some moving /adding of others in the lumbar region. The reason for this surgery is because Faith can only currently sit in her wheelchair for an hour before having to come out of it and side lie as her lower back swells up and she is in pain. This makes it impossible for Faith to ever go anywhere and also the fact that Faith is now unable to tolerate lying on her back because of the pain.

We don’t want Faith to have to go through the pain of an operation again so we’re feeling really sad about it all.

Update 17th April 2013

Faith is just recovering from her gastro peg replacement operation. Her back is improving from the spinal surgery – but we still have to have her lying on her side after every 1 hour in her wheelchair as her back begins to swell up! Never mind. She went for a walk in her wheelchair in the sun today. Almost ran over a dead frog! Poor thing.

Faith is having a pampering haircut session in ten minutes and then snuggled up to bed. She loves a head massage and I will give her a foot massage too! Mae is running around the house very loudly and will have a hair cut too. Both enjoy playing in water. Mae leans over the bath when Faith has one and helps shampoo her hair. Faith has the cleanest hair in the house (at least a hairwash a day!). She will have her nails painted later too. Mae is busy eating chocolate from Easter! And ‘busy doing nothing’ she tells me!

We have central heating now too. Six weeks with a broken boiler and only fan heaters to warm us all. Luckily Faith has an electric blanket!

Daffodils and other flowers are out in the garden. We love bringing them in to the house for everyone to enjoy, especially smelly ones (roses etc) for Faith.

Update 23rd December 2012

Faith is recovering well from back surgery. However, she has a swollen lower back. The screws from the spinal pinning seem to be in place, but one may be rubbing the skin around it.

Faith can enjoy her baths now and being at home with her family and Mae.

Faith loves the Christmas lights and is busy listening to Christmas music and Mae, her sister, pulling numerous crackers!

Merry Christmas to everyone at Post Pals and thank you!

Update 4th April 2012

Faith is having her VNS (vagus nerve stimulator) battery in her chest changed in Kings Hospital in the middle of April. She is also on the list for major spinal surgery. We will only be given 8 weeks notice prior to surgery and it will have to happen before this November 2012 when her severe scoliosis (crushing her organs) will have fused so surgery cannot happen after then. She will have 6 months to a year recovery. We are all extremely anxious but will have to wait for the date that could be any time. Her seizures are also keeping us very busy all through the nights at the moment. Not good for the bags under my eyes.

Debbie sends lovely cards and gifts to the girls. She is great. Claudia from Germany has sent us Lush cosmetic products so our house smells divine. Mae is crazy on cooking at the moment and drawing. Faith is enjoying the music cd’s people send (thank you all!) and being pampered. Thank you to all of the wonderful people sending cards and gifts as it makes our day. The post is so exciting now!

Hope you all are okay and Happy Easter.

Update 27th October 2011

Thank you ever so much for the Halloween packs. We had screams of delight from Mae, and Faith had her ‘interested/what is going on’ face! Mae is putting the sticky bat and spiders in the porch already! They loved the spider web, bubbles and glow sticks too! It was a great surprise, thanks. Mae loves the skull ring lip gloss and Faith has ‘tracked’ the wonderful pumpkin glow stick. The best ever gift bags I have seen. It must have taken lots of hard work getting everything together. Tomorrow we are making the ghost chocolate lollies from the book!

Faith is getting a bit better every day. We’re just waiting to find out if her 2 scars are infected. She also has thrush from the antibiotics – not surprising.

Update 13th October 2011

Faith still has a temperature and is off epidural now. She is being sick but they are not sure if it is the morphine or infection. They will decide if we come out tomorrow (Friday) but it’ll probably be Saturday or Sunday. I will keep you posted.

Thanks for our post. Mae loved the Japanese card and we’re going to find out what it says.

Update 1st October 2011

Faith has had her pre op assessment (bloods, X-rays, etc) and it is all go for the hip reconstruction on 11th October!

Faith has enjoyed being in the garden lately with her feet in a bucket of cool water. Her sister Mae joined in and splashed everyone.

The cards, personalized or handmade, are super and so so clever. Thank you everyone for your kindness. All letters are so lovely to receive and exciting to see them arrive by the postman. Faith received a super light up lamp – thank you. It is a multicoloured lava /glitter lamp and is brilliant. It can go right up to her face and lights it up and Faith loves it! We have also just received the letter about Dotty the Dalmatian and the girls are both so excited about getting a puppy in the post! Thank you.

Update 12th September 2011

Faith is having a complicated operation on 11th October. She is having her leg (femur) broken and a triangle taken out of it and a bone graft from her hip bone to reform her ball and socket joint. She will have to have rehabilitation for a month and lots and lots of pain killers. This is because her bones are like honeycomb and crumbling inside and her hip is about to dislocate if she does not have this operation to re-align it.

Please could everyone send her good luck and wish her well for the operation. It has been a year in the planning and fingers crossed it all goes well.

Story written 2009

Hanna was born with a condition called VACTERL. All the letters stand for something that is associated with the diagnosis.

We were not aware that Hanna had the condition before she was born so it was a big shock to us.

The midwife gave Hanna her first bottle but she choked and turned blue so the resuscitation team were called. Immediate investigation found that Hannas’ oesophagus coming from her stomach was joined to her trachea and her oesophagus from her throat was a blind end. This is called tracheal oesophagus fistula and oesophageal atresia -TOF/OE – the T and E (American spelling).

At sixteen hours old she had to have a life saving operation to join the oesophagus back up which was thankfully successful (although reflux is severe).

Subsequent investigations found Hanna had a flat trachea, a TOF cough (often compared to a seal or dog barking), extra ribs (V – vertebrae), anal stenosis (A – anal), Ventricular Septal defect (VSD) (C – cardiac), unilateral renal agenesis (only one kidney) (R-renal), malformation of the right thumb (L- limb).

Hanna had surgery at 3 years old to improve the function of her thumb.

Hanna has many hospital visits each month as with all the different organs involved she is looked after by a large team of consultants.

Hanna also suffers from asthma and has many chest infections and lots of missed schooling, and misses her friends a lot.

Update 21st October 2012

Lotty and Hanna really enjoy getting their Post Pals mail, it is the highlight of the week when getting their letters and gifts. There are some very thoughtful and kind people out there who take time out of their very busy schedule to think of my girls and that really warms my heart.

Now Hanna is at senior school, with the long hours (she is there most days from 8am – 5.45pm) and ever increasing amounts of homework, she feels it is the right time to move on from Post Pals. It is very important to Hanna to reply to all mail and she just can’t fit this into her busy life now, as already she has been off school poorly with her condition due to getting really tired. Lotty isn’t too impressed with this decision though!!

So I want to say, although our family will no longer be active Post Pals members, we still have all the Pals and their many friends in our thoughts and prayers.

Update 10th April 2012

Unfortunately Hanna’s health hasn’t been very good recently. She has had a nasty chest infection which also exacerbated her asthma. She ended up having a week off school, which really upset her as she loves school and misses her friends a lot when she is poorly.

Better news from her nephrology appointment. Her one kidney is behaving itself and working hard enough to do the job for 2!! We are very pleased to hear this and this cheered Hanna up.

Luckily Hanna’s chest improved enough to allow her to go to a ballet audition to appear in Swan Lake with the English Youth Ballet. There were 133 girls at the audition and they were only needing 50. We are very proud of Hanna as she got chosen!! She is very excited but it is going to be a lot of hard work with long rehearsals so we are keeping our fingers crossed that her health will be OK.

Thank you very much to everyone who sent Lotty a birthday present. She had a fabulous day and celebrated her day by going to the pub for lunch and having a Tweenie birthday cake!!

Also, thank you for thinking about my girls over Easter. With all the beautiful handmade cards and gifts they received it was more like Christmas than Easter. We have got enough chocolate to open a sweet factory so it’s a good job both my girls love chocolate, although they will have to hide it from Daddy!

I’m sad to say due to the mad increase in the cost of postage stamps Hanna will no longer be able to write to all you lovely Post Pals friends. This certainly doesn’t mean she doesn’t appreciate the letters and gifts – they are all so welcome and really do put a smile on her face. If you have an email address that you don’t mind Hanna knowing, she would love to continue to keep in touch this way.

Update 23rd February 2012

Hanna has had a good half term. She went to stay at her Nan’s for a couple of days which she always enjoys. We went bowling and Hanna was not impressed when Lotty beat her!!

The best news she received though was finding out she has been offered a place at the school she really wanted to go to. All the hard work she put in has paid off. She has always been determined not to let all her health problems stop her doing anything she wants to do in life and she has once again proved this to herself and to others. We are very proud of her.

Hanna is busy with rehearsals for a drama production at school and is very excited to be doing 3 performances at the beginning of March. She is also involved in a dance festival with school.

Hanna’s health continues to be good except for her continuing wrist pain. We have an annual nephrology appointment coming up soon so fingers crossed her one kidney is still working well enough.

Hanna’s Gran is now half way through her chemo. We have been raising funds to reach a target of £500 for Cancer Research, and then I am having my head shaved.

Thank you to everyone who continues to be so kind and generous to both my girls. Hanna especially likes to hear from her regular friends but we have also had lots of post from new people recently so that is great too!!

Update 11th January 2012

I hope you all had a merry and relaxing Christmas and a happy and healthy New Year to you all!!

We had a great family Christmas at Center Parcs, although Hanna didn’t have a brilliant Christmas day as she was in bed all day vomiting. She was so upset as she also had to miss all the activities we had planned for Christmas day and Boxing day. Fortunately, she was feeling well enough by the Tuesday to open all her presents and join in again and got to do the activity she was most looking forward to; a painting pottery session. She chose to do a cheeseburger money box and when it had been fired we collected it. She had the biggest smile on her face and all the days she had been poorly were forgotten. We also held off making our Christmas dinner so we all enjoyed a family meal together on 28th December!

We went to visit Hanna’s Gran for Hanna’s birthday and New Year. Although Hanna’s Gran is still having chemo, she was having a break before 16 weeks of intensive treatment, so she was in fairly good spirits and could join in with all the parties.

I want to thank all the people who took the time in the busiest time of the year to think of my girls and send them a Christmas present. Each and everyone of them was appreciated and put a great big smile on my girls face. I would love to list everyone who sent something but incase I accidently miss someone out, I will just say a big general thank you from the bottom of my heart.

Also, thank you to all of those who sent Hanna a birthday gift. Hanna enjoyed opening them all, even though she had unwelcome help from her little sister Lotty – sisterly love eh?!!

Thanks to the mild winter we have had, Hanna’s chest problems have been less severe and she even made it to her school Christmas Party – the first one since she started school where she hasn’t been off school poorly/in hospital!

Her wrist continues to be troublesome so we are hoping the next visit to the plastic clinic may offer her something else to help her cope with the pain.

Lotty has had a hospital admission with croup/asthma attack and is still struggling with her chest, but as always keeps smiling.

Update 10th September 2011

Firstly, sorry for such a delay in updating Hanna’s page. The summer holidays have been very busy with some very good and some very bad but mostly in between news!!

Health wise, apart from the constant pain/problems Hanna is having with her wrist, the summer hasn’t been too bad for her. We managed to get much better control of her hayfever this year so that helped her asthma stay better too.

Lotty, on the other hand, has really been struggling with her health and along with asthma problems, she has now been diagnosed with a heart murmur and we are waiting for a heart echo.

Hanna took part in another dance competition and came 5th in her solos and won gold and bronze medals in her tap and ballet groups.

The biggest highlight for Hanna though was winning an award for bravest child through the charity Wellchild. It was an amazing experience, with an award ceremony in London. There were lots of famous people there and Hanna even shook hands with Prince Harry in a VIP reception. Here is a link to their website if you want to see some photos of the evening:

http://www.wellchild.org.uk/Events-Awards.asp

Unfortunately we also had news that Hanna’s Gran is very poorly and so thoughts and prayers to her and the family would really be appreciated.

Hanna is enjoying being in Y6 and is now working hard towards getting a scholarship to the school she really wants to go to. She won’t sit the exam until January but is starting to do practice tests to help her feel more confident.

She has also started going to Guides. She was really nervous about going as she would be the youngest there (as opposed to being the sixer (leader) of her Brownie six) but she came back full of enthusiasm!!

Thank you to all of you who have sent post out to Hanna and Lotty over the summer. Hanna says now she is back at school she will find time to write some replies before she starts getting too much homework!! Also, thank you to everyone who has sent gifts to the girls. They are always so appropriate and appreciated and I wish I could bottle the smiles and giggles they get when opening the parcels.

Update 13th July 2011

A ballet exam result at last!! It was worth the wait though, as Hanna got an A. We were really pleased for her and I think she was really happy too, although she never let on!!

Hanna’s wrist seems to be improving slowly. With physio and the support she wears everyday now, Hanna is finding it easier to use and needs much less medication for the pain. She knows that stopping the gym training has really helped but she still really misses it.

Hanna has been kept really busy with lots of activities going on at school. She has done a filming course, had visits to some of the local senior schools, visits to independent senior schools, winning her race at sports day and completing a writer’s course for children on the gifted and talented register at school.

Hanna is looking forward to the summer holidays as she has a dance competition, a holiday with her Gran, and most importantly lots of lie ins!!

Hanna continues to have lots of hospital visit/appointments but all her consultants are pleased with her at the moment.

Thank you to all the kind people that continue to write to Hanna and Lotty. Each letter and gift is met with a big smile and that, in my opinion, is the greatest thing to see.

Update 10th May 2011

Well, after what we thought was a great start to her physio sessions, we came away after Hanna’s last appointment feeling very down hearted.

It seems Hanna was being too brave with the pain and despite intensive physio, Hanna’s physiotherapist is unhappy about the lack of improvement and advised Hanna to stop her gymnastics.

Hanna was very upset about this as she loves her gymnastics and its been a big part of her life since she was 3. Hanna understands that it is important to get her wrist sorted as it’s the hand she writes with and uses for most things, so if left untreated could cause life long problems, but still found it hard to accept the decision we all had to make.

Also, as the Hayfever has kicked in Hanna has been suffering with sneezing and wheezing, so not a good few weeks for her.

In true Hanna style she has tried hard to not let it affect the rest of her life and she smiled through the weekend at a dancing competition in which she did really well. We were all so proud of her.

For all those asking about her ballet exam results – still no news!! It is driving us all mad and we have never had to wait this long for results.

Again, thank you all so much for sending Hanna and Lotty fantastic letters and gifts. Lotty wanted to add a special mention to Libby for the plasticine kit. It kept her entertained for hours!!!

Update 11th April 2011

Hanna has had a better few weeks this month. Although her wrist is still sore, the physio she is having is really helping her manage the pain, and along with a new wrist support, she is now much happier and is even managing to go to all her gymnastic sessions.

Hanna has also just been on her first residential holiday with the school. It was fun and games sorting out all the medical care/food issues etc with the teachers and holiday staff but so worth while as Hanna had a fantastic time. She had the chance to try out quad biking, archery, fencing and abseiling. The only down side to the holiday was that she lost her wrist support – typical Hanna!!!

Hanna has just attended another renal appointment for her yearly MOT. She was very brave whilst having her blood tests, so I was very proud of her.

Her physio appointments continue and her physiotherapist hopes that with intensive treatment the muscles that are weak in Hanna’s wrist will strengthen and hopefully the pain will subside. I am really pleased with Hanna as she has been doing her physio religiously and always with a smile!!

Thank you very much to all the people who remembered Lotty’s 3rd birthday. Cards and gifts continued to arrive for about a week so Lotty thought everyday was her birthday and kept on singing Happy Birthday to herself!! Also, thank you to everyone who continues to write back to Hanna. She loves receiving and replying to as many as she can.

Update 4th March 2011

Hanna has not had a good few weeks. First she was sent home from school feeling unwell and it turned out she has tonsillitis again. She was really poorly for a couple of days with a temp of 39.2 and she never left her bed. Once she had got over the worst of this she then developed another cold and chest infection so she was up most nights coughing for a good 2 weeks. So she has had a lot of time off school and was missing her friends a lot which got her down a little.

I’d just got Hanna well and back at school when Lotty then came down with the cough/cold /high temp and she then developed a chest infection. She went off her food and was such a sorry sight – never smiling or even wanting to play. She lost some weight (which had struggled to put on in the first place!) but is slowly putting it back on again.

Luckily they are both now well and enjoying nursery and school once again. In fact, Hanna came home from school tonight with a big smile on her face as she was awarded ‘STAR OF THE WEEK’ for tackling problems head on with determination and with a smile too!!

Hanna’s renal scan went well and they were happy with the size and function of her one kidney so that was reassuring to hear.

Her wrist/thumb problems haven’t been so straight forward. Her plastic surgeon sent her for an x-ray and thought he saw an abnormal bone growth on her wrist. He was sure that this was the cause of the pain and said that she would probably need a small op to fix the problem. As he isn’t a bone specialist he said her would have a meet with the orthopedic team to discuss it. We came home relieved that although she would need surgery there was going to be an end to the pain.

However, the plastic surgeon rung a couple of days later to say although the bone wasn’t entirely normal it was still in the limits of normal and wouldn’t be causing the pain. So, back to square one!!
Another visit to the plastic surgeon and it has now been decided to refer Hanna to the physiotherapist with a hope that they can help the pain with exercises and possibly fit her with a splint. So, tune in next time… and thank you if you are still reading!!

Not a very positive update I’m afraid but hopefully next time we may have better news to share.

Thanks to everyone who continue to write, email and send gifts to Hanna and Lotty. They have been greatly received as always but even more so over these last few weeks.

Update 3rd January 2011

I hope you all had an enjoyable and peaceful Christmas and a happy and as healthy as possible 2011 to you all.

Unfortunately Hanna’s last week at school turned out to be a repeat of last year. She went down with a nasty cold, high temp and cough, which as usual affected her asthma badly so all the parties, celebrations and the retirement assembly that she had been practising for all last term were missed. Obviously she was feeling quite down and missing her friends badly and even I was having difficulty raising a smile!!

This is where all you wonderful people, who take time out of your busy hectic lives to think of other children, means so much to me and my girls.

Every time a Christmas card arrived or parcel to go under the tree, Hanna’s little face lit up and this made that week before Christmas all the more bearable for her. Lotty was just as excited to get all her post and is now an expert parcel un-wrapper!!!

On Christmas day I was very organised and wrote a list of people who sent Hanna and Lotty gifts and what they received so I could then list it all on here BUT… that was 9 days ago now and can I find that list…!!! I just wanted to let all of you know who sent gifts to them that they were really appreciated.

So many of you sent fantastic gifts to both Hanna and Lotty – they couldn’t believe their eyes when all the Post Pal parcels were piled up for them to open after lunch! Thank you is never enough but I just want say THANKS to all of you who sent gifts. Lots of fun was had with stickers, craft activities and nail varnish and full tummies all round after chocolate and sweets!!

Also, after such a busy time I want to thank all of you who remembered Hanna’s 10th birthday. She was very impressed with the amount of Hello kitty items she now owns!!

Hanna’s hospital visits start on Friday with a kidney and urinary tract scan. I will let you know next update how that goes. She is also having problems with her wrist and hand that she had surgery on, so an appointment to see her plastic surgeon has been brought forward.

Ending on a positive note – Hanna has just found out that she passed her Grade One piano. She was very pleased as she found out that the examiner was a very strict one and even failed a few candidates!!

Update 4th December 2010

Hanna has just been seen by her chest consultant. He was happy with her lung function results and wants her to leave her medication as it is and see how she goes over the winter months.

Hanna took her Grade 1 piano this week. Thank you to those who sent her good luck wishes and cards, it was very kind of you.

Hanna and Lotty were very excited about the arrival of so much snow. They have both been out to play but were soon back inside in the warm!!

Thank you everyone who continues to send the girls great letters/emails and fantastic gifts.

We hope you all have a fantastic Christmas and Happy New year x

Update 8th November 2010

Hanna continues to stay well and is making the most of it by enjoying her dancing and gymnastics. She has also just gained her ‘friends to animals’ and ‘musician’ badges in Brownies. Her piano exam is on the 1st December. She is practicing hard but is a little apprehensive as this is her first music exam, so lots of good luck wishes from all her fantastic post pals would be appreciated!!

Hanna saw her chest consultant last week. He was pleased with her lungs and asthma and she had good lung function test results. As winter approaches though he wants her to leave her medication as it is to see how her chest copes this year before thinking of the possibility of reducing some of her inhalers. This is great news as up until now when any medication changes have occurred it has always been an increase in her inhalers/adding new meds.

Lotty is as cheeky as ever and her GORD, asthma and eczema are behaving!!

Thank you as always to everyone who sends my girls letters, emails and gifts. Anything craft wise is given a real thumbs up at the moment as Lotty has discovered the joy of sticking and colouring and it is great to see both my girls, despite the age gap, enjoying activities together.

Update 18th October 2010

Hanna continues to do well health wise and so is really enjoying being at school with her friends every week.

Hanna took her Grade 2 tap exam a couple of weeks ago and was awarded a distinction.

She is now practicing hard for her Grade 1 piano exam which is in November – still waiting for a date to come through!!

Lotty is also good this month. Her eczema is still up and down but is much improved from the bad episode she had so she is back to our smiley cheeky girl again!!

Thanks so much for all the post that continues to arrive for Hanna and Lotty. It’s still so great to see their excitement when letters and gifts arrive for them. Special mention this month goes to two people – Mandie and Ana-Alicia, as Hanna couldn’t decide between them. Both have sent such fabulous letters, poems and thoughtful gifts to both girls.

Update 14th September 2010

Hanna has enjoyed her summer. As her health is always better during the summer we have tried to do as much as possible together as a family.

We have met up with friends, been to visit family in Durham, Hanna has been on a caravan holiday with her Gran, and she has also competed in a Dance Competition. She did very well and I was very proud of her.

True to form, Hanna had been at school only 2 days before she came down with a cold with a temperature and streaming eyes and nose to boot!! Despite being up most of the night coughing and struggling with her chest she still went to school and finished her first week.

Upping her asthma meds seems to have kept the chest infection away that we were worried she would get and she is now feeling a little better.

On a positive note, she came home from school saying she loves her new teacher and that she is going to work very hard this year to keep up with her friends. Despite having less than 70% attendance last year she has been put in the top group for numeracy, literacy and reading. We are all very proud of her achievements.

Lotty has really been suffering with her eczema these last few weeks and has ended up on steroids which don’t really seem to be helping her. She has been very sore and a little grumpy (who can blame her) so I want to send a big thank you to all of you who send Lotty gifts too as this has really cheered her up these past few weeks.

Again, a big thank you to all of you who send letters and gifts to Hanna and Lotty. It really does make their day to open the post that comes for them. To all of you who continue to reply to Hanna – this really means a lot to her, so keep it up!!

Hanna wants the special mention this month to go to Katherine who has sent her the most fantastic quilt ever. She says it’s the best quilt she has ever had and is very proud to sleep under it every night!!

Update 9th August 2010

With the weather turning back into the typical British summer, Hanna’s asthma and hay fever have become much better, so she is enjoying her school holidays now.

We have just returned from a holiday at Donna’s Dream House in Blackpool. It is the best holiday we have had! The house was brilliant with a toy room that resembled Toys R Us and I’m sure Hanna and Lotty would have been happy to stay in it all holiday! Len Curtis and his team made sure we were well looked after and courtesy of the vouchers we were given as part of the holiday we were able to visit the Sealife centre, Louis Tussauds waxworks and Blackpool Zoo. We wanted to go in the Tower too but just ran out of time!! If you are considering applying to go – do it!! Thank you to Viks for recommending it.

Many thanks, once again, for all the letters and gifts that have been sent. Hanna has received some lovely Eeyore gifts and lots of girly stuff and craft kits that have kept her busy!! A special mention this month to Becki who sent the girls a seesaw – it’s fabulous – so thank you for your generosity.

Update 10th July 2010

Hanna is struggling with the hot weather. The high pollen counts are really affecting her hayfever and asthma. Most days her eyes are red and sore, she is constantly sneezing and wheezing, but in true Hanna form she doesn’t let it stop her!!

Hanna took part in her schools sports day last week and came second in her race – so I was very proud of her!

Hanna has also been a very busy Brownie and has recently gained her first aid, agility, collectors and dancers badges. She is also close to completing her booklovers badge.

We saw her cardiac specialist last week and following several tests/scans, ECG’s and heart monitoring, he has decided that Hanna’s heart episodes are not due to arrhythmias which is good news, but this leaves the situation unresolved. He is unsure of what might be causing it, but is going down the root of blood pressure problems. So we have to make sure Hanna drinks at least 2 litres of water a day and has plenty of salt on her dinners!! This is going to be revised in 6 months time or sooner if the episodes worsen or increase in frequency.

Thanks once again to all the kind people that have taken the time to write to Hanna and send her gifts to keep her smiling!! Hanna wants special thanks this month to go to pal Alice P. Despite all her health problems she took the time to send Hanna a parcel full of wonderful girly things that she loved. Also, Hanna wants to nominate Richard Brisley for the weirdest parcel of the month award – you know who you are and never mind smiling, Hanna was crying with laughter when she saw what it was and why it arrived for her!!!

Update 6th June 2010

Hanna has had a good month. She has had another episode of her heart problems but apart from that she has kept well. The warmer weather does seem to help Hanna’s health and as long as we keep on top of her asthma and hayfever with lots of medication she seems happier too!

She had an appointment with her plastic surgeon who was pleased with her thumb and her fine mobility skills.

During half term Hanna had the opportunity to go to a holiday club again where she thoroughly enjoyed herself trying out archery, arts and crafts, trampolining and go-karting.

We also seem to be getting Lotty’s medical problems under control and so she is now enjoying being able to run around in the garden.

Thank you once again for all the fantastic cards, letters, and emails you have sent Hanna and Lotty. Also a big thanks to all the generous gifts that have been sent to the girls. Again there have been so many that I can’t remember everyone individually but Hanna wanted a mention this month to go to Cheryl who sent Hanna a gorgeous Eeyore t shirt and Lotty a cute cuddly Pooh bear from Disneyland Paris.

Update 30th April 2010

Good news from us this time!! Hanna had an appointment with her surgeon following her barium swallow. The results showed no significant strictures and fair peristalsis, which was good as this means that Hanna will not need any surgery – which she was very happy about. The surgeon thought the cause of Hanna’s eating problems was a severe flare up of her reflux which caused inflammation of her esophagus so it was difficult and uncomfortable for her to swallow food. As it seems to have settled almost back to ‘normal’ for Hanna, it was decided to leave meds as they are as to see what happens.

On another positive note, after having Vikki suggest that we might qualify for a holiday at Donnas Dream House, Hanna’s Nan nominated us. We have just found out we have been offered a holiday in August. Hanna and Lotty are very excited as after Hanna’s dad lost his job in the summer we thought a family holiday this year was out of the question.

Hanna has been overwhelmed with all the gifts she has received recently. She is very selfless though and is concerned that Lotty has not received any!! Lotty has been quite unwell with her asthma and GORD and at the moment takes more medication than Hanna and so she said Lotty deserved some gifts instead. So a request from Hanna: ‘If you were going to send me a gift in the next few weeks could you send Lotty one instead. Thank you.’ I am incredibly proud of my little girl for always thinking of others despite all she goes through.

After the TV feature of Post Pals the amount of post and especially emails Hanna has received has been incredible!! There are just too many to list but it is wonderful that people that don’t know Hanna have taken the time to send her words of encouragement and praise, so a big thank you to you all. You are all fantastic yourselves for taking the time out of your busy lives to make a child smile.

Update 3rd April 2010

Hanna still continues to have issues with her swallowing/eating. She had her barium swallow as planned and now we wait for an appointment to discuss the findings with her surgeon. Why does it always seem to be a waiting game?

Unfortunately Hanna contracted tonsillitis a couple of weeks ago which caused her to be in bed for nearly a week with a high temperature and unable to eat anything at all. She has lost quite a bit of weight and as eating is difficult anyway she is struggling to put the weight back on. She says she will suck all the Easter chocolate she gets so that will help her!!

Despite being poorly, Hanna managed to take part in the Sport Relief Mile and we even saw Dick and Dom. Hanna was very excited as they ran right past us!! We managed to raise £50.00.

Thank you so much to all those who have continued to correspond with Hanna. She loves replying to all who include an address and I have to fight to use the computer now as she is always typing/emailing to someone!!

I can’t remember everyone as there are too many to keep track of but you know who you are and you are all stars for brightening up my daughters’ day. Big thanks to Sarah G who sends so many letter/cards gifts, not only to Hanna, but also to Lotty too.

Update 7th March 2010

Hanna has had a tough month. Eating has been a struggle and her ‘TOF cough’ has reared its ugly head and has really got her down. She has spent lots of time off school and has been really missing her friends.

We had an appointment with her surgeon as we are concerned that her eating problems may be due to a stricture in her oesophagus. Her surgeon requested an urgent referral for a Barium swallow which will help him decide whether she needs surgery for a dilation or whether her eating difficulties are caused by something else. This is scheduled for 23rd March so I will post an update when possible. For the moment it’s just a waiting game.

Hanna enjoyed her gymnastics competition and her floor routine went really well. Her vault wasn’t so good but overall she came 14th, which was very good as she has missed a lot of training sessions due to asthma and chest infections over the winter.

Hanna is looking forward to taking part in the Sports Relief Mile and it is something to focus on to keep her mind off her forth coming tests and possible surgery.

A BIG thank you for all the cards and gifts Hanna has received. They have really cheered her up when she has been fed up and in discomfort and she especially liked the Hello Kitty toy that came all the way from Japan – the official home of Hello Kitty!! Once again, thanks so much to everybody that has sent post to Hanna, it is very much appreciated and has helped her through a tough few weeks. People’s kindness has astounded us.

Update 3rd February 2010

January has been a better month for Hanna. She has been full of cold but with increased medication we have managed to keep chest infections at bay (so far anyway!).

Hanna has had some investigations on her heart-echocardiogram and a 24 hour recording of her heart activity as her heart consultant believes she may be suffering from an arrhythmia.

As Hanna is new to Post Pals she has only just had her postal address put on her page, so we had no post in January, but thanks to Amber, Jessica, Charlee and Coire for the emails she received. They really cheered her up.

Hanna has a gymnastic competition next week but with an on going ankle injury she is not too hopeful that she will do well, so any good luck messages would be welcome to encourage her to stay positive!!

Update 13th January 2010

Hanna has had a difficult December. She caught a virus which left her in bed for a week with very high temperatures and no appetite. This then turned into a chest infection so antibiotic therapy was given. After another 2 weeks she was feeling a little better. This meant she missed lots of schooling and she was especially upset missing the last week of term when all the fun activities, such as the class party, making decorations etc, took place.

Fortunately she was well enough to enjoy Christmas and got lots of nice presents. Five days later was her birthday so cue more presents -we now need an extension for all the toys!! She was very excited to receive the smarties from Post Pals, so thanks for that!

Story written 2011

Harrison is known as Harry.

Harry was born 5 weeks prematurely and spent three days in special care. He was then in and out of hospital with feeding problems, reflux and infections. At 18 months old he saw an immunologist and was diagnosed with an immune deficiency. He then started 3 weekly hospital visits for immunoglobulin therapy but was still in and out of hospital with infections.

Harry was in hospital aged 3 with ecoli septicaemia and was very sick for 10 days. It was also discovered he had Epstein Barr virus and had a months treatment with a chemo drug called Rituximab which wasn’t very nice at all.

Harry also has behavioural problems and was diagnosed with ADHD and then when he started school it was picked up that he had developmental problems and was diagnosed with autism.

Harry started having subcut immunoglobin therapy and I was trained to do this even though I hate sticking needles into my child.

Harry was referred to the geneticists because of his range of problems and they have found that there is a problem on his x chromosome so are doing more tests. The genetic testing has been very stressful for the whole family as I may carry the same gene and may have passed the abnormality onto him so feel so guilty. Ellie, his 15 year old sister, will also need testing as this could impact on her future plans to have children.

Harry is very small for his age and has now been referred to the endocrine clinic as he may need growth hormone so the daily battles still go on.

Update 20th October 2018

Harry has been troubled with urine infections and is actually off school with a chest infection, so he’s on antibiotics again. He was at hospital and he’s grown a few cm, but put on a massive 2 kg since June. We’ve been trying to get his food intake up in the day so he doesn’t have to have it through his PEG overnight .He had a lovely quiet birthday, so thank you all for his cards and pressies, Mummy has been poorly and in hospital lots, so we’ve not been away on holiday, but we are hoping for a few days away with grandma to Southport in a Caravan at half term. Thank you all for the smiley post I love it. Best wishes to everyone Harry and Liz (mummy )

Update 20th November 2017

Harry is still having weekly immunoglobulin therapy infusions and is so fed up with it at the moment. He has nightly injections to make him grow. His weight is slow, so he has a feeding tube and is fed overnight with this. He has recently had a bad tummy and has been off school over a week, he’s fed up with feeling rotten. He loves receiving post and smiles, as life is horrible in the winter as he picks up more bugs and infections due to his Immunodeficiency. Thank you to everyone that writes to Harry and sends presents to cheer him up.

Update 29th January 2017

Thank you everyone who has sent Harry post and gifts over Christmas, he has had a wonderful time. Harry has still been having infections, weekly immunoglobulin infusions, daily growth hormone injection and overnight peg feeds.
He has put on a massive 6kg since March which is wonderful.

We had a phone call from a Genetic doctor and Harry has been on the DDD study for six years. They have discovered a new Gene mutation called TLK2 and this is why Harry has all his medical conditions. So we have a reason for his difficulties, it’s hard to take in but there are only 5 worldwide so not much is known about it .
Thank you for your continuous support, happy smiles and gifts.

Update 2nd April 2016

Fingers crossed Harry might get out of hospital, he went back to theatre and had his peg changed to a button, as the pressure was too high.This was causing it to be too tight and it kept getting infected.

Update 2nd December 2015

Harry has had a really bad month, he has been admitted to hospital 3 times with viruses and he is really struggling with everything. We have just received a letter from the hospital and they are listing Harry for a gastrostomy, so we just have to wait for the appointment now.

Update 6th September 2015

Harry has been in hospital for a UTI. Just two days after he got home though, he ended up back there with shingles. He’s had a rough month, but luckily, we got him well enough in time to start High School.

Update 6th August 2015

Harry is still on daily injections of growth hormone and continues to have his weekly immunoglobulin therapy, however the consultant has tripled his dose due to having loose bowels. He is coping well but not gaining as much weight as expected, so they have been talking about a gastrostomy.

Harry is starting High School in September which is going to be stressful.

Thank you for all his post and smiles.

Update 30th March 2015

Harry has been very unwell and lost lots of weight which is a concern. The doctors are thinking of giving him a gastrostomy if he doesn’t gain weight. The immunology doctor wants to tripple his infusion dose to 30mg of Hizentra a week instead of 20mg a fortnight. He is going into hospital to have his infusion where he will have three needles giving him his treatment. He’s such a good boy.

Thank you for all his post. He’s really into Minecraft, football and still loves his Lego. Many thanks for everything.

Update 2nd March 2015

Harry has not been well and is going in to hospital on Wednesday this week. He will be having colonoscopy, endoscopy and biopsies on his bowel to see if Epstein Barr Virus is back. I think he will be needing smiles. Thank you for the post that has been sent to him.

Update 1st December 2014

Harry has not been well recently and I went to Birmingham to see another immunologist as I thought our usual immunologist was rather too familiar with Harry and I’m so glad I did.

In 2008 Harry was unwell with Epstein Barr Virus in his bowel and was treated with Rituximab (a Chemo drug). Harry then stopped having bowel problems. This past 12 months his problems have come back and I told doctor about this. He then voiced his concerns to Manchester Immunologist who had obviously forgotten about it, as he said something had come to light and so Harry needs urgent scopes and endoscopies as soon as possible. So we’re now praying it’s nothing sinister and are glad I sought a second opinion. Mummy’s instinct.

Sister Ellie broke her leg and has had to take a year out of uni, and I’ve been suffering with my depression and have also been diagnosed with an immune deficiency, like Harry.

Thank you everyone for our smiles, letters, and well wishes xxxxx

Update 18th August 2014

Harry has had a bad month. He’s been unwell and having some jerking movement and falling a lot of late. Last week he had four falls, one that resulted in a broken front tooth and injured face and leg so he ended up in hospital. He had to go down to theatre to sort out his mouth and teeth and had a brain scan. Luckily no tumours were seen but he’s having further tests for epilepsy. He’s very sleepy and clumsy at the moment so more hospital appointments and now the dental hospital to add to the list.

I have also been on crutches with a bad leg and not been coping well with my depression. I’m feeling very alone and fed up, but thanks for cheering Harry up as he’s not been as happy as he usually is. Many thanks to all.

Update 5th May 2014

Harry is currently in hospital with shingles.

Update 9th March 2014

Harry has been off immunoglobulin for eight months as a trial, but he continued to get sick and his antibody levels came back low, so in December he started back on treatment. At the end of December he was poorly and was in hospital for 8 days with Acute Gastroenteritis and lost more weight.

Chicken pox was going round at school and because of his non existent Antibody Levels and being prone to shingles and the chicken pox virus, he couldn’t go to school. From 2nd December until 3rd March he remained at home with his Mum. This was particularly hard for him because he didn’t see his pals at school and was bored and fed up.

He returned to school two weeks ago and has enjoyed his time back.

Thank you for all the smiley post and gifts from everyone, he loves them. They mean so much to him. Keep well everyone.

Update 4th December 2013

Harry has not been well and has had a couple of bad months. His hypo mobility has been bad so he’s been using his wheelchair more. He was in hospital due to his leg pain and put on stronger meds. After he was discharged he then had nose bleeds and high temperatures so we had to stay. Then he developed a non blanching blood rash and had sepsis so he was put on IV antibiotic for five days and when we came home he still wasn’t a hundred percent and started with tummy pain. We went back to the GP who said he showed infection on his urine. I contacted his Immunologist at Manchester Children’s Hospital who we are seeing next week. Harry has been off his treatment for Immunoglobuling but with recent bacterial infection I’m hoping he will be put back on his two weekly infusions to try and keep him well. Harry is poorly with a tummy bug and his asthma today as well now.

He loves his post and gifts, it cheers him up when he’s having a rough time, thank you all so much. Yesterday I received a gift from Post Pals, what a surprise, some yummy chocolates and a scarf which I’m going to enjoy tonight after a bath when Harry is in bed. Thank you all.

Update 1st October 2013

Harry continues to be troubled with infections and viruses but is having a break from Immunoglobulins. He has daily injections of Growth Hormone treatment and has lots of daily medicines but still continues to smile.

We have seen genetics and he has recently been diagnosed with Uniparental Disomy on Chromosome 1. This is very rare and not much is known about it but genetics say this is why Harry is troubled with his immune deficiency ADGH ASD and Growth Hormone deficiency and also hyper mobility.

Due to his hyper mobility he has been in a lot of pain and has now got to use a wheelchair for pain management. Harry continues to solider on though and is a happy boy and copes so well with everything.

His hobbies are football, he loves Man United, and he also loves outdoor activities. We have recently bought a tent and have had a few camping trips which was great fun.

Thank you for all your post as it makes him happy.

Update 16th March 2012

I’m sorry Harry’s story has not been updated but we have had a rough time as a family over the last nine months. I would like to thank everyone who has written and sent gifts to Harry as they really do cheer him up.

He loves his Dottie teddy and he takes it to bed with him every night. Whenever I am giving Harry his treatment or if he is in hospital, Dottie teddy always has to be by his side for a cuddle!

Usually summer time is better for Harry as there are fewer bugs for him to catch but last summer Harry was ill with shingles, having it three times by November. This meant quite a few stays in hospital.

Due to the gene defect Harry has, he has failed to gain weight and grow, so we started daily growth hormone injections at the end of last year. It was really hard for Harry having to have yet another daily treatment but they did help.

In February, Harry’s consultant asked us to meet with another consultant specialising in genetic disorders. The outcome of the meeting was that they think Harry could have a rare genetic disorder called Cartilage-hair Hypoplasia and we are now waiting for the results of the testing. In the meantime, the growth hormone injections have been stopped because they can cause tumours in children with Cartilage-hair Hypoplasia.

Harry continues to have immunoglobulin therapy in hospital every three weeks and he has just been discharged following his 4th stay in hospital in the last four weeks due to a strep throat infection. We are hoping to stay at home for a bit now.

Update 1st June 2011

Harry is unwell and in hospital now with a non-blanching rash. He’s so fed up.

Story written 2010

Holly was born fine but when she was 8 weeks old she suffered a series of respiratory arrests and ended up on a life support machine for 3 weeks. The doctors then decided that it would be best to turn Holly’s machine off as there was nothing else they could do for her and her chance of surviving was nil, so we had Holly christened and everyone came in to say their goodbyes. Then we turned Holly’s machine off and for the next 24 hours she battled her way through and the next thing a miracle happened and Holly opened her eyes. That was the sign she gave us to tell us that she was prepared to fight and who were we to argue with her. The doctors told us that Holly would not live for very long as she had been left with cerebral palsy, epilepsy, chronic lung disease and oxygen dependent. She had to have a tube fitted in her stomach so she could be fed and she had a visual impairment, but if Holly was prepared to fight then so were we to make sure she lived a very fulfilled and happy life for as long as she was with us.

Over the next few years Holly spent a lot of time in hospital and on many of those occasions she ended up on a life support machine in intensive care. This was due to many things but the most frequent was a chest infection that would very rapidly develop into pneumonia for her. On every occasion we were told that the outcome was very bleak but what the doctors didn’t realise is that Holly is a very brave and strong little girl who has a passion for life and is determined not to let anything beat her.

In the last 12 months, Holly’s breathing started to deteriorate and for many months we were going back and forth to the hospital to see if they could help Holly, but every time we tried a new medication there was no success, so Holly got to a point where she could not go on like that any longer. The doctors told us that she would have to have a tracheostomy fitted as there was no other option, so they took Holly down to theatre and inserted a tube into her throat to help her breathe, and as usual, Holly came round from the operation with a glint in her eyes.

Now it’s like she has been given a new lease of life as she can breathe a lot easier. Holly has a lot to go through each day and she has a lot of epileptic fits every day, amongst other things, but she never complains and she is the most inspiring and brave person I will ever meet. Holly doesn’t get a lot of opportunities to socialise or make lots of friends which is why I think Holly will love receiving post and having it read to her and also being able to make lots of new friends.

Update 14th March 2020

Our beautiful Hol decided that she was ready to go to sleep forever tonight. We always told her she was in charge and when she was tired it was ok. She was our whole world and more and our heart’s feel like they have been smashed into a million pieces. She made such an impact on this world which will last forever and I’m so lucky that she picked us to be by her side for the amazing 18 years that we had together. You are and always will be loved beyond the stars and the moon my Holly doll.

Update 1st October 2019

Holly is still having a turbulent year unfortunately. She is battling daily constant seizure activity that is proving very difficult to control. This is having a major impact on everything for her at the minute. She’s unable to attend school or go to all her usual social activities as easily as she used to be able too. 

She’s just spent some time in hospital where they carried out lots of tests on her brain, so we are just awaiting the results to try and put a better plan in place to help her have a better time. 

Ruby started her new school on the 9th September the same day Holly had to go into hospital, which was a bit rubbish for her but she never moaned in fact she just says don’t worry mum it’s fine.I’m so glad she can be so mature and grown up when we need her to. 

She’s loving seniors and has loved being able to try out Trumpet lessons in music, much to my dismay, ha ha. 

She is still loving girl guides and looking forward to going to camp again even though she got hit by storms at the  last one, ha ha. 

Thank you for supporting my girls continually, it means the world to know that people care and we really do appreciate every piece of post we receive. 

Update 9th September 2018

So sorry for being a little late on our updates, life has been so so rubbish this year. As you all know Hols was taken into hospital in January and we are still trying to get out the other side. The last update I think I told you about Hols kidney stones and that it was horrific. The pain she was in was so bad she had to have breathing support and for us as a family it was heartbreaking to see her suffering day in day out for so long. While I battled away with everyone and anyone that would listen to me to get them to hurry the operation up. In the 16 wonderful years of looking after Hol this has had to be one of the biggest challenges I’ve faced and as a family it’s tested us to the limit. We had the operation and they removed all the kidney stones in both kidneys, but while doing the operation they broke both her legs so not only did she leave hospital with clear kidneys and trauma to deal with, but also a pink and purple full leg casts. We have been working very closely with the palliative care team, as Holly has been so poorly over the summer and everyone has been really concerned, as she’s needing lots and lots of strong painkillers and various other medicines to try and keep her balanced.

How things stand at the minute, we are still very concerned about her and we are still nowhere near back to getting Hol near to where she was before we went in hospital in January, but we are praying every day for our little miracle to arrive and take all this pain away that she’s in. We are heading to another meeting first thing tomorrow to discuss Hol again with the neurologists and the respirator team to see if we can help her anymore than what we are doing. Ruby has been a superstar throughout all of this, even though we got home for the summer, we had to cancel all our summer plans and our holiday that we had desperately been looking forward to, as Holly has been too ill to leave the house. She’s so mature and I’ve got to say I couldn’t be any prouder of the two of them and how they have coped, dealing with everything this year. I’m so sorry I’ve not been posting many updates,it’s because life has been so rubbish, so I’m hoping things are going to become more stable for us as a family very soon and I’ll have some happy posts and pictures to update you all on. Thank you for supporting the girls it really does lift us all xxxxxxxxxxxxxxxxx.

Update 2nd October 2017

Holly is heading for her sweet 16th birthday in December and its getting very exciting. She has had a busy summer, she went off to an international guide camp in Leicester and camped with all her friends, which is always a challenge for us, but she gets so much out of it, it makes it all worth it.

She had a few episodes of fractures over the summer as her osteoporosis continues to get worse. She also is having lots of problems with her bowels and we have had to have a few emergency meetings with the palliative care team.

She also had a great week away in the summer to Bendrig Lodge in the Lake District,where we managed to do lots of fun activities as a family, including sailing and climbing and caving. These times are so precious when we can all do activities together.

Ruby is super excited at the minute, as its her big 10th birthday  on 26th October and we are planning a neon disco party.

She has also been super busy with us over the summer, but also continues to be a great help to us over such a busy time of year.

She had a bit of a run in with a basketball over the weekend and dislocated and broke one of her fingers!!!! She was super brave.

Update 6th May 2017

Holly has had a busy month with lots of hospital visits with the ongoing problems with her bowel!!
She’s also had to start a new medicine that is giving her some rubbish side effects, but she really needs the medicine so we are a bit stuck.
The girls had amazing post over Easter and this month and the letters that arrive are so lovely to hear how everyone else is getting on.
We’ve all just done a run for Holly’s hospice today which was lots of fun and Holly got a lovely medal.
We are getting super excited for the Post Pals party now and can’t wait to see everyone again.
Sending you all lots of love.

Update 2nd October 2016

I really don’t know where to start with this update we have just had the most amazing time in Chessington World of Adventures with Post Pals. We’ve done lots of fun activities like cuddling a panda bear, to meeting Rapunzel at dinner and of course Ruby loved all the rides, I think the cobra was her favourite.
With lots of help from the Post Pals team we even managed to get Holly on the princess carriage ride which was so special as Holly doesn’t get to go on rides.
While away, Holly was struggling a little bit with lots of nasty seizures but we didn’t let that spoil her fun.

Over the last few months Hol has been struggling more and more with her bowel and bladder and they want to do surgery in a couple of weeks!! We are very scared as every time she goes under general anaesthetic it’s very dangerous for her as her lungs are so weak now.

Thank you to everyone that’s been sending lovely post through to the girls this month. Ruby has been quite poorly too, spending some time in and out if hospital due to her getting salmonella and she’s still recovering now.

As always we are so grateful to you all for the love and thoughtfulness you show to the girls, so massive thanks and lots of love from us all.

Update 22nd August 2016

Holly has had lots of hospital appointments as her bowel and bladder have more or less stopped working very well and the specialists want to do surgery very soon to fit a colostomy and a permanent catheter to help fix the problems.But it’s really dangerous every time Holly goes under anaesthetic, so I’m finding it difficult to agree a date at the minute, as I’m feeling quite scared about it all.

We made it to guide camp with Hol in July, but had to cut it short and rush her back to hospital as she came down with a chest infection and has not been great, as her lung capacity is so tiny so she struggles to maintain herself.

Thankfully after a few weeks hard work and lots of determination from Hol we are through to the other side and can start enjoying the summer holidays.

We have come down to Devon for a little break and I’ve got to say the girls are loving every minute of it, but it’s very hilly, so mine and Gary’s back is not enjoying all the pushing up and down. Haha.

Anyway, massive thanks guys for keeping my girls’ spirits up and always making then smile. As always, we really appreciate that you think of us.

Happy holidays everyone. I hope the sun is shining for you all.

Update 6th April 2016

Hi guys,

Hope you all had a great Easter.

Holly has been having another tough month, as she has got another broken knee.

Unfortunately her osteoporosis has become more and more of a problem for her over the last month. We are waiting to go into hospital next week for a special scan, to see how many fractures she has got at the minute, all over her body.

We had a nice time at Easter and we got out and about on Good Friday, but Holly was very cold and couldn’t leave the house for the rest of the weekend, as her temperature was dangerously low.

We had a fun time yesterday though, as I took Holly and Ruby to their first ever book signing.

Ruby loves reading and Holly loves listening, so it’s a great combination ha ha.We went to meet Holly Smale yesterday and she signed their books, so they are on a mission now to get David Walliams to sign there books, as they love reading them.

Anyway hope you all have a great month lots of love from all of us xxx

Update 24th January 2016

Hi everyone,

Happy New Year!

Well we had an eventful Christmas, as Holly had a broken knee and was in a cast from the top of her leg down to her toes.

It happened as we transferred her from her chair to the bed, and she has now been diagnosed with brittle bone, from the results of the x-rays and scans.So we are just waiting to see a specialist about her starting a new treatment, to make her bones stronger.

She was delighted that Father Christmas delivered her a new Disney Princess charm for her Pandora bracelet and a portable music system so she can listen to music and enjoy all her  favourites like Little Mix and Megan Traynor with Ruby.

Ruby was so delighted with the whole of Christmas and she was so excited to keep receiving  her elf post and couldn’t wait to take each new letter to school, to read to her class.

All Ruby wanted was the David Walliams book collection, as she is a massive fan of his now and loves reading, so she’s started collecting the fairy books now too and the horrible history books.

We were over the moon with  the beautiful cards we received in the run up to Christmas and we can’t thank you all enough.

Holly is desperately trying to stay warm as we get through January. Ruby is a little nervous, but very excited to be going on her first Brownie camp next weekend.

Holly has been too sick to get to get Guides lately, so she had a lovely surprise the other night when the Guides turned up at our house to do a Guide badge, with Meg which was so much fun.

As always thanks for thinking of us, and being by our side and making our girls smile all the time, lots of love from all the Smallmans xxx

Update 2nd December 2015

Happy December! We have had a busy couple of months; Ruby won a well child award and she was invited down to London to meet Prince Harry! However, the day before we were due to leave Holly took ill, so it was touch and go if the hospital were going to let Holly travel. I decided to find a way and so we spoke to a doctor who helped us get a portable device, so that we could give Holly IV medicine on the go!!!
We are so glad we all got to go to the awards, as it was an amazing experience and Prince Harry was so lovely.He sent the girls a letter after we got home, to say how much he appreciated the gift that Ruby had made him.
We eventually got over that chest infection, but Holly is having major issues of pain in her bowel and also not being able to control her temperature. So it is proving difficult to get out and about with her, but every good opportunity we get, we are off.
We loved receiving our popcorn pan from Candy Chaos, it was so much fun and we really enjoyed doing it all together.
The girls have received some beautiful post from all you very kind people, so thank thank thank you so much for thinking of them.
We are just heading into December and the girls are very excited that Father Christmas will be heading our way soon and I’m just praying that we can stay out of hospital for it.
We are busy planning Holly’s birthday this week and as her special present I took her to Lapland UK, as I’ve always wanted to take her to Lapland and I’ve got to say it was so magical and she loved it.
Holly will be 14 this week, which is such a massive milestone for Holly, as they said she wouldn’t reach her first birthday.Also being so poorly the last year it feels really emotional, but we are so so thankful.
The girls are busy making lists for Santa and hoping they are on the good list ha ha!!
Merry Christmas everyone, we hope you all have a very healthy, happy time and thank you for thinking of us all year round xxx
Lots of love Holly and Ruby Smallman

Update 13th October 2015

We have been so busy since our last update it seems like life never wants to slow down. We had a great summer and enjoyed some time while Holly was well enough to travel, the best bit being that we travelled over to Disneyland in Paris and it was the best week ever. The girls had such a magical time, they really enjoyed meeting the princesses and they were delighted when Prince Charming came out of the parade to give them a kiss.

Amazingly Holly must have been so happy to be at Disney, her oxygen levels reached 100% for the first time in months.

Holly has been battling another chest infection which developed from catching a cold.She has had a difficult couple of weeks, but we have managed to care for her at home with the help of our acute response team.

We were delighted to receive a letter a little while ago to tell us that Ruby had won the WellChilds Nation award for most caring female, for all the help she gives  to her big sister.

We are so proud of her and the best bit is that we are all off to London next week, where Ruby will receive her award and she also gets to meet and spend time with Prince Harry!! To say she is excited would be an understatement!!!!!!

Thank you all for your post and lovely parcels that the girls have received, someone sent us a beautiful H and R decoration, which the girls have put in their bedroom.

We really appreciate all your time and thoughtfulness that you show to us all the time and are so grateful for everything.

Can’t wait till next month to share all our pictures of when Ruby met Harry ha ha xxxxxxxxxxxxx

Update 5th August 2015

I’m so happy to be posting that Holly has had a good couple of weeks and that means she has been able to start living again.

It all started with the amazing Post Pals party, which is certainly a highlight of our year. I can never get over how everyone is thought of so individually, no matter what their abilities. They have something for every child there, it really is a day that dreams are made from and of course this year the fabulous Jamie was there with his candy! Oh my goodness, I couldn’t believe my eyes when I saw it all!

What Holly didn’t know was that after the week of the party we had planned a surprise trip to Disney for her. This was because she had been so ill. However, the week before we were due to go she took ill again, so I was really nervous about it. Thankfully she improved enough for us to go in the end though.

The trip was so magical from start to finish and we were amazed how well Holly responded to the trip. Holly and Ruby had a lovely time and got dressed up as princesses and went for dinner.

Just after we returned home, we had a call to say Holly’s bone marrow isn’t producing white blood cells at the minute that fight off infection, so we are busy sorting that out at the moment.

We hope you are all enjoying some sunshine at the moment. Love to you all and as ever, thank you for always thinking about us xxxxx

Update 3rd May 2015

Holly has been having a turbulent couple of months. She has lost the ability to control her own temperature which is causing lots of problems and also stopping her from leaving the house a lot of the time as it is cold outside!

She has also been having lots of problems keeping her oxygen levels up and needing more support, so we had meeting with the palliative care team and our hospice this week and were told that they think there has been a deterioration in her ability to breathe by herself! Not the greatest news and also a very worrying time for us as we don’t fully understand the consequences of this yet.

She hasn’t been able to go to school for nearly a year now which is really sad as she loves mixing with all her friends and doing lots of fun stuff.

I’m currently trying to arrange a surprise to take her to Disney in Paris, so I’m very excited to get that all organised, but it’s very difficult with oxygen plus insurance. Hopefully we will get there with it all soon.

Holly is spending most of her weeks at hospital appointments at the minute, so it’s lovely for her to receive all the lovely post and letters and cards, as it gives us something else to focus on.

Ruby has been doing lots of work at school lately as she’s got her sats tests coming up, but she really has no idea what they are so she’s not stressed about them at all!

I’m sorry my updates aren’t as happy as they usually are, it is just that I’m finding it really hard to be so positive lately with all these tests coming up this week.

Lots of love to you all and thank you so much for being so kind and lovely to my family xxxxxx

Update 30th Novemer 2014

Things are still very hectic here and Holly is still having lots of problems due to her being so ill in hospital recently. It has had a major effect on her, we are struggling to control her temperature as she keeps dropping to hyperthermia levels, plus her oxygen sats are very temperamental too. We have had to have a meeting with the doctors this week as they are concerned about the signs she is showing, they think the right side of her heart has been left a little bit damaged from all the infection in and around her lungs as she is having problems clearing her fluids. We are very unsure at the minute whether this is how Holly is going to be now or if we are still feeling the after effects of her recent admission. She is an amazing little superstar and is battling through as she always does.

It’s Holly’s birthday next Saturday and she will become a teenager which is a very important day for us all. However, with everything that’s been going on I haven’t had a chance to arrange a party or anything so I’m hoping to organise something nice for her this week.

Ruby has been back to hospital for her MRI scan so we just have to wait for the results now.

The girls are super excited for Santa coming. I’m sorry for the lack of posts with our thanks for all our amazing post and special gifts, as they really do brighten our days and we are truly grateful to you all.

I’m hoping that my next up date will be a lot more positive. We hope you all have an amazing Christmas, lots of love from us all xxxxxxxxxxxx

Update 29th October 2014

Just a quick update as life has been really hectic lately. Holly has been very ill and was rushed into hospital 3 weeks ago. When we got there we realised she had hypothermia, double pheumonia, plus a fluid infection around the lungs and septaceimia, so she was put on Cpap and it has been a very worrying time for us all.

The doctors said they thought we might not bring her home this time as she was so poorly but thankfully with lots of hard work from the wonderful team at Alder Hey and the amazing Holly herself, she turned a corner. She is still not close to being herself and it’s going to take lots of TLC to get her right.

Ruby was very upset by the whole situation and was finding it all hard to deal with, then all of a sudden she took ill herself and was also admitted to hospital with a very nasty water infection and had to be catheterised and put on IV antibiotics as she was in so much pain. This meant we had two daughters on two different wards which was very difficult for us, but thankfully Josh is fully Trachi trained and he floated between both girls so that me and Gary could do shift changes between the girls.

It’s been a very hectic month for us and to say we are all feeling exhausted is an understatement, but hopefully next month we will have a much more positive update. Fingers crossed xxxx

Update 28th August 2014

Holly is having a really bad time at the minute! Her epilepsy has become uncontrollable and she’s having lots of different medicine changes to try and settle her down. We are hoping to see some improvement very soon.

She’s got lots of important hospital visits coming up this week and next, as she’s got to go and see a bowel surgeon and someone about her upper limbs as her scoliosis seems to have got worse.
She had an amazing time at Guide Camp and it’s something I don’t think we will ever forget. She joined in with lots of new activities, she went on a kata canoe with all her friend which was great fun and she also was one of the first Guides to complete her challenge badge. She took part in flag down with people from all over the world which was amazing and she went to a disco! I think she quite liked all the dancing with her friends!

Thank you for all the post we have received from everyone I’m sorry my updates aren’t as often as I’d like.

Ruby is very excited to be going back into Year 2 in school next week and is very excited to be with her new teacher. Josh has had a very exciting time lately as he went for an audition and he has started filming for a part in a show on CBBC called The Four O’clock Club, so I’ll let you know when he’s going to be on!

Update 2nd August 2014

Hi everyone, well our household has been very busy and hectic over the last couple of months!

Holly has been having lots of problems with her bowel which is still on going and it’s causing her to be in lots of pain. We have started new medication but unfortunately it hasn’t worked so she has now been referred for an urgent referral to see the top bowel surgeon at Alder Hey.

Her epilepsy is causing her to have lots of problems too and we don’t seem to be able to get her seizures to settle, but we have been changing all her meds so hopefully we will see some improvement soon.

She has been working hard in school when she can get there and I had a great parents evening at the end of term where the teacher told me she’s top of the class so I’m a very proud mummy.

Holly is just about to embark on her next adventure – we are going to guide camp tomorrow with her guide unit and we are camping at Windsor Great Park!! Her unit are going for a week but Holly would never be able to cope with that so we are going for two nights and camping in a tent! Yes, that’s right, a tent! I have had to send quite a few emails to get us sorted as I don’t think they know or understand how much equipment Hol is going to turn up with! She never travels lightly! It’s all very exciting though as I never thought I would see the day she would go camping with her friends, but I’m also very scared! I’m sure we are going to love our new adventure though.

Ruby is her usual bundle of energy and looking forward to her break from school so much! She had a go at horse riding last week and loved every second of it. She is also attending a multi sports summer camp which she is loving.

Josh turned 16 last week and so he will now be moving on from Post Pals but he wanted me to say a massive thank you for all the post he has reviewed over the years. The amount of smiles his post has created is endless and he appreciated each and every single one of them. He is going to college in September to pursue his love of acting so hopefully one day you may see him on the telly.

Anyway, I just want to say a massive thank you to you lovely, lovely, lovely people, that continually support us as a family all year round. We love our post as it brightens up our days. We are sending you all massive hugs and kisses and we hope you have an amazing summer!

Update 28th July 2014

Josh is now 16 and he would like to say thanks for his post over the years. Please continue to send post to Holly and Ruby.

Update 12th March 2014

Hi everyone I’m sorry for being so quiet lately, we seem to be spending more and more time at Alder Hey every week.

Holly has been having a rough time lately as her whole body seems to have gone out of sync, which we think is due to her age! She has been suffering lots with her Epilepsy so we have been trying different medicines to try and get the seizures under control. We have been having major problems with her bowel and bladder too which has resulted in us having to start catheterising her to empty her bladder and we are talking to bowel surgeons about the best management for Holly. She has also just started having botox injections into her muscles to help her move her limbs as the tone is becoming quite tight and her skin is breaking down in some areas.

All in all she has been having a rubbish time lately but I’m hoping with all the new management plans things will start to improve. It would help both her and all of us too, because it really does have an impact on all of the family, as I see us having less and less time every day for Josh and Ruby. Josh is doing his GCSEs at the minute so it is a really important time for him and I do wish there were a few more hours in the day so I could support him better.

I hope you are all well and thank you again from the bottom of my heart for every card letter or gift that arrives for my children. Holly and Ruby have so much fun together opening the post and Ruby feels like she is helping her big sister and they can have fun together.

Update 18th November 2013

Hi everyone! Sorry for the late update but life has been very hectic as usual in our household.

Holly’s chest became bad in August and it has taken her a long time to recover from it, she has had a few short trips to hospital as her breathing has really been affected by it all. Her respiratory team are a little concerned by it all now so she is going into hospital again tomorrow to have some in depth tests carried out on her breathing as they are unsure whether she may need some support to help her breathe. I’m hoping not as life is hard enough for her and us as a family with everything that we have to fit in a day, so to add something else will only make things harder. We are just waiting on some results from her bloods as she has been exhausted lately but we think it may just be the infection has taken it out of her.

She has managed a few fun things with her guide group though in-between all this, she had a fun sleepover with them all and then took part in a lovely remembrance day parade, it was so lovely to see her with all the other girls.

She’s getting excited now as it is her birthday in December so it is another major milestone in her life that we are so grateful to see every year it comes around.

Ruby has been very busy lately, it was her birthday and she turned 6 in October. She had the most fun with all her friends as we had a pop-star party which Holly loved too with all the music. She has developed a big love for Lego so she was thrilled to get some birthday money and off she went to buy herself a set from the Lego shop – it took at least an hour to decide! She said her best card was a One Direction card that had her picture on with the band and she’s stuck it right next to her bed.

Josh has been busy revising for his GCSEs lately so we are relieved that they are over for the time being. He has joined an acting class once a week and really enjoys going, he is hoping to go to college next year to study it but he has got to go through lots of auditions first so we are hoping it all goes well.

I’m so touched that even though I don’t get time to update as often as I should that you still don’t forget us. We are so grateful for your support and when that letter arrives and I get to read it to Hol and we forget all the other rubbish stuff we have going on some days, it is just fab. We can’t thank you all enough really and just as I’m writing this an elf package has just arrived addressed to Ruby and I know that her face will light up when she comes home from school. She just loves her magical Christmas letters and takes them all to school to show everyone.

Anyway sending you all lots of love and I promise to update with Holly’s results soon xxxxxxxx

Update 10th July 2013

Hi everyone, well I’ve had a bit of a up and down month. I’ve been having lots of problems with my bowels but my doctor has given me some new medicine to make that better and I am waiting to go and see a new doctor. I am visiting a new school at the minute as I go to senior school in September but I am a little bit worried and so is my mum and dad – I can just tell! I am liking the people though and I am looking forward to making new friends. The only thing I don’t like is the uniform, it is yellow and green and anyone who knows me will know that those two colours will clash terribly with my bright pink wheelchair.

I had such a lovely time at the Post Pals party it was so much fun and again singing hands were amazing!!! Me and my mum love the picture that the lady drew of me and my sister too, my mum has put them up as she loves them that much. I love getting to meet all the lovely people who are so kind to me all year round as we as a family get to say thank you to them all in person.

I had a lovely hand made card off Kevin this month which is so clever and every time he sends me one we can’t wait to open it up to see what it will be. Also, Kim and Stevie sent me some lovely post this month.

I’ve had a bad week as I’ve got blisters coming out on my skin and I’ve not been feeling too good, so we have been at the hospital all week, but my bloods have just come back today and they show that there is some infection in there so hopefully I’ll be on the mend very soon.

I am running my own night in my guide group this week so it is called ‘all about me’ and I am doing a sensory quiz for all the girls and then they are watching a DVD about my life and then they are going to be writing cards to some of the Pals. I am going to  tell them all about Post Pals so I’ll let you all know next time how I get on.

Josh and Ruby have just got their school reports and my mum and dad are really happy with them. Josh got an A in his dance exam and Ruby got an award for being the best teachers helper.

I just want to finish by saying a massive thank you to Viks and Kate and all the volunteers that work so hard all year looking after us special girls and boys you truly are AMAZING and I am so glad that you are my friends!!!

Take care and have a good month enjoying the sun, lots of love Holly xxxxxx

Update 16th April 2013

Hi everyone! So sorry for my lack of updates latley! Life seems to roll by so quickly and you don’t realise some days.

In the last update i was telling you about Holly’s pain problems that she had developed, so we put a plan together with the Palliative Care team and thankfully the medicine seems to be working by suppressing her brain over night which is stopping all her organs going into spasm, which was causing the pain.

Holly has just become a member of her local Guide Group and i’ve got to say it is one of the most positive things that has happened to her as before she had no real opportunity to make friends or join in socially with children her own age. I’ve got to say it was possibly one of the most nerve wracking things i’ve done walking in on the first night with her, as i was so worried if anyone would speak to her or want to be her friend or how she would fit in, but the girls are the nicest group of girls i could have wished for as they have made us feel very welcome and the best thing is that Holly has made friends.

We have been battling with all the cold weather lately as it is so hard for Holly to breathe when it is so cold, so we have to keep her indoors wrapped up well, but thankfully we get post to read from all you lovely people which brightens our day.

Holly’s health has been quite steady over the last couple of months but each day is different for her. She’s having some problems with her gums at the moment because one of her epilepsy medicines is making them grow abnormally causing her hair to fall out in parts, but she needs it to control her seizures so it is a bit of a catch 22 situation.

Josh is still busy being a typical teenager, he seems to love his computer rather than talking to me, but i’m under the impression that it is quite normal for his age!! He has had a bit of a rough period in school in the last couple of weeks as a group of bullies decided to target him and they attacked him in the school yard and he had to go to hospital as they were very vicious. Thankfully he is ok now but as the bruises heal i still find it very hard to understand how other human beings can be so cruel.

He has just started his Duke of Edinburgh award with school and is very excited about his first expedition this weekend in the Lake District but not so sure he fully understands how hard its going to be doing a 10 mile hike with his kit on his back, but i know he will love it!

He is also still very much involved with the comedy trust in Liverpool and has just helped them secure some funding from the British Heritage Trust to run some comedy workshops in Liverpool which is very exciting.

Ruby is growing up so fast and is wanting to do more and more to help to look after her big sister day by day. She spent an hour the other day talking to Holly and teaching her to say her name by breathing a certain way, it was very sweet to watch.

She is turning out to be a very creative little girl, any spare minute she has she wants to glue, stick, cut out, make, draw and create. My house is like an art gallery and i’m not allowed to throw out anything in the recycling bin as she says that ‘ mum, it could be made into a car or a swimming pool for my dolls’!!

She has a new found interest in Lego which she seems to be really enjoying at the minute. She had been saving up for a spongebob squarepants Lego set from the Lego shop and she finally had enough last week after Easter and so she was thrilled to be able to go to town to the Lego shop. I must say it takes a while to get out of there though as she is busy eyeing up the next piece, which is now a swimming pool with a slide set!!

Anyway, thank you all for your continued support to us as a family, it always touches my heart every time i read a letter or card to Holly as i know that other people care. To know you all take time out of your lives to make my children smile is just so lovely and we are very very grateful to each and every one of you!

Update 26th March 2012

I’m so sorry for my lack of update lately, my health has not been very good over the last couple of months and I’ve been finding it hard to keep on top of everything! I’m hoping that things are on the up now as I’ve started with lots of new medicine so fingers crossed.

Holly has had quite a good few months with her chest, she has only had a few chest problems but she is having increasing problems with her bowels and also her epilepsy has suddenly gone a little worse, so we are increasing her medication and are hoping this helps! Apart from that we have been trying to get Holly out of the house a little more lately as the weather is warming up a little. We took Holly and Ruby to see the new Muppets movie which they both loved – Ruby was dancing in the aisles and Holly’s eyes were moving everywhere as I think she loved all the music. Over the weekend it was really sunny in Liverpool which makes it easier for Holly to breathe so we took her and Ruby to see Disney on Ice in the Echo arena and they both dressed up in their princess dresses. I face painted flowers on their faces and we also added lots of glitter which was fun and they both looked like the belle of the ball and thoroughly enjoyed the show.

Ruby is very excited for Easter at the minute, she keeps asking me how many sleeps until the Easter bunny comes. She has just learnt how to write her own name and Josh and Holly so she is really enjoying practicing her writing skills and is drawing pictures all the time of her family. She has just started bringing a reading book home from Nursery which has ignited a big love for reading and trying to recognise letters, so when she received her books from Post Pals this month she was over the moon and has taken them everywhere with her to show everyone. She is also desperately trying to find a way to get to Peppa Pig land where Dottie has been as she was astounded that Dottie had met Peppa.

Josh has been really busy with lots of school work lately as he is just picking his options and really can’t decide what he wants to be when he grows up. After some thought he suggested he might like to become a zoo keeper, to which me and his dad chuckled a little, but thankfully I think that phase has passed now. He has also been busy with his comedy and has been performing for charity events and gaining lots of experience.

Things have been quite tough for me over the last couple of months as I seem to be constantly battling the system to get what is needed for Holly’s care, so when a parcel or a card arrives in the post it is such a welcome distraction from what can sometimes be quite a dark day. You all continue to put priceless smiles on my children’s faces and I am eternally grateful to each and every one of you. Thank you, thank you, thank you, for your continued support. Sending you all much love xxxxxxxxxxxxx

Update 10th November 2011

Hi everyone, I’m so sorry for my lack of updates. Holly is having (on average) two appointments a day, so tying to fit everything in is proving hard.

Holly’s had a stable time over the last couple of weeks and I think the fact that the weather is still quite mild for this time of year is helping. We always find the winter particularly nerve wracking and we find we just keep praying that her chest stays clear each day.

Ruby had a lovely birthday in October, she went to our local play centre with her friends and brother and sister for the afternoon, and then the highlight of the day was that she went to the build a bear shop. She got to build her own bear and buy him an outfit which she thought was amazing and strangely enough she has decided to call her new bear sausage roll ha-ha!

Josh has been really busy over the last couple of weeks as he has been filming his sky1 program with John Bishop which will be shown at Christmas. He had the most amazing time and met some lovely people so we are all really excited to see him on the television.

We have also done some filming for Children In Need this month regarding our local children hospice, Claire House, so that should be shown on the BBC on the night. I just hope they make me look a little younger and hide my bags from under my eyes ha-ha!

Holly will be 10 in December and its going to be such a monumental day for us all as we were told that Holly would never see her 2nd birthday, so for her to reach double figures is such a big deal. I’m busy trying to arrange a big birthday bash for Holly, its going to be a fancy dress party with a winter wonderland theme and I want Holly to be the belle of the ball for the day. I’m so excited as it gives me a big opportunity to show off my amazing daughter and tell everyone how proud I am of her and what she has achieved, so I’ll hopefully have lots to tell you next time i write.

As always, your kindness is never lost on our family as a whole. The Halloween bags went down a treat and Ruby is still scaring everyone with her spiders! Someone also sent the girls two bears to build and I must say it was a really enjoyable activity for us to do together. Thanks, as always, to Dominic who keeps us entertained with his antics! Ruby also received a present all the way from Stacey in the USA which was amazing!

Much love to you all xxxxxxxxx

Update 31st August 2011

Hello everyone, firstly can I say a massive sorry for my lack of updates, our life has been so hectic over the last couple of months and I don’t even know where to begin. Let’s start with Holly!

Well, after Holly having such a bad winter, she had to go in and have an operation to have a portacath fitted into her chest. This is so that the hospital has got immediate access into her veins so they can treat her quickly. That went well and as usual Holly seemed to breeze through in her amazing manor like she always does. It was a little harder for me to deal with at first as I didn’t like the line that sticks out in her neck and I also felt like it was something else which is always at risk of infection, so in turn puts Holly at risk.

We then had to start a big battle with everyone. As I’m sure many parents will agree, you have to fight for every bit of help you need and it started to take its toll on me which I have never let it do before, so I was finding it hard to write updates as well as just getting through the day. I’m feeling much better now though so I promise to keep up to date as much as I can.

Holly has had a mixed summer, some good weeks and some bad weeks, but in the whole we have managed to avoid hospital which is always a bonus. She got a lovely surprise as her family all clubbed together and bought Holly an IPad 2 with a pink cover, of course! We are still trying to work it out and learn about buying good applications for her for it. She has also got lots of her favourite films on there though which is great. We are just trying to find an arm that will hold the IPad and attach to her wheelchair so she can watch as she travels! She is such a princess but I must say Holly has been stuck in a lot over the summer.

The one thing that helps her to get through is all the wonderful post she receives – from letters, postcards, parcels; it is all so uplifting when it arrives and it brightens up her day. I’m still astounded by people’s kindness and the fact that they take the time to care. You are all such special people and we treasure everything that Holly receives.

Ruby seems to have grown up a bit over the summer as she never stops chatting and she is always on the go, which is really lovely for Holly as she always includes her. She is in love with everything Scooby Doo and Cars 2 at the moment so poor Holly has to give her a ride around the living room on her chair and pretend she is the mystery machine. She is just about to go back and do her second year at nursery so she is very excited as she will be one of the big girls this year.

Josh has also been very busy over the summer as he entered a competition to become Liverpool’s Young Stand Up Comedian of the year and out of 250 children HE WON hooray!!! This was a massive achievement and so now he is doing some performances to help out people and gain more experience, but he’s been interviewed by our local radio stations and also appeared in the local press which has been very exciting for him, so maybe one day he will be following in John Bishop’s shoes!! He has also been keeping up his drumming and has done well with that.

We are trying to have some days out this week as a family all together but the weather is not too great in Liverpool so we’ve got our fingers crossed that it brightens up soon and we manage to get out all together and do some fun stuff.

Anyway, I hope you are all well and I wanted you to know we really do APPRECIATE all the post that lands on our doorstep, I just wish I had the time to write you all replies, but unfortunately my days are so full with medicines and feeds and changing as well as trying to see to Josh and Ruby. There are just not enough hours in the day. Sending you all lots of love and see you all next month xxxxxxxxxxxxxxx

Update 23rd March 2011

Hi everyone Holly had surgery yesterday (had a port put in) and came out of the operation well. She has coped well with the surgery but has come down with a chest infection over night so she’s now trying to fight that off with ivs for the next two weeks.

Update 11th March 2011

Well, what can I say about this month? I have spent most of it at home as I have not been strong enough to go out yet. My chicken pox have left lots of marks all over my body so I’m hoping they fade soon.

My poor brother and sister have been ill as well this month with throat and ear infections which hasn’t been very nice for them. I am at home at the moment having lots of different medication to try and get rid of MSRA. This is because I’m going into hospital on the 22nd of March to have an operation. I need to have a line put in my chest so they can get medicine into me more easily, as all of my veins are not very good at the minute. I’m not looking forward to the op but my mum and dad said it won’t hurt once it is done, so fingers crossed everyone.

My dad had a nice birthday this month. We made him a cake which my mum tried her best with, but it wasn’t as good as my dad’s cakes haha!

Holly has received some fabulous post this month. A card came all the way from Betty in Australia, we had a lovely postcard from Liz with a picture on so we could see where she lives, a lovely cat card from Jenny, and then all the children received some wonderful personalized Valentine cards! Scott also included some Valentine chocolate which went down really well. Dominic has been really busy again this month with lots of tales and he sent some lovely Winnie the Pooh tea towels. Dottie also sent me a great letter telling us about her passport so we can’t wait to see where she ends up. Jenny sent me a lovely letter with a picture of her Dragon in ‚Äì oh my goodness, Josh loved it and he also thought the paper he received his letter on from Jenny was very cool.

How lucky have we been this month as Ruby and I received some lovely teddy bears at the beginning of the month from Jane. Josh was so happy with his camera and photo album from Jillian Malcolm and Angus too and he has decided to save it for a family day out when it gets warmer and Holly can go out again. I’ll post some pictures when he’s done it. Ruby has been very happy at bath time this month as she received some rubber ducks from Jooles, Emily and Daisy. Holly also received a great height chart and some stickers, but unfortunately Holly was taller than the chart, but we had great fun trying to lie it next to her! Penny, I promise to try and grow a big pumpkin. Also, Adam and his mum Lesley sent us some seeds and a lovely foil scratching picture that my dad has been helping me do. The noise and feel is quite funny but it goes through my mum! I also have some different coloured nails this month thanks to Melanie who kindly sent me some new ones and last but not least, I was so surprised to receive a signed postcard from Gordon Ramsey – oh my goodness how fab! Thank you so much Jenny. Also, Ruby and I have made some great badges and my Japanese bookmark is fabulous. Finally, we received another card and stickers from Sophie from Holland – Josh was so happy with AJAX stickers.

Anyway, thank you to everyone for thinking of me again this month, as when I am stuck in the house all the time it really brightens my day to receive post. I’ll speak to you all again soon when I’ll have my new line. Take care everyone, love Holly xxxx

Update 5th February 2011

Hello everyone, well not much to tell you about this month as I have been too ill to do anything. My chest didn’t seem to get any better from before Christmas and then a couple of weeks ago I broke out in chicken pox (for the second time). At first it wasn’t too bad except I was really spotty (I looked like Dottie the Dalmatian haha!) but then I became very ill very quickly so my mum and dad rushed me to hospital in an ambulance again and when we got there the doctor discovered that I had pneumonia again. This time my right lung had collapsed with it and by this time I was vomiting and not feeling very well at all. I was struggling to breathe which isn’t very nice so the doctors said I needed to get a line in quickly so they could get some medicine into me, but the only problem with that is my veins are damaged from all the treatment I have had before so it was very difficult. After 8 attempts and some very sore arms, legs, hands and feet, they finally got one in.

The next day was just as hard as I had not been to sleep for a couple of nights so I was feeling very tired and everything was becoming very hard. The doctors came in to see my mum and dad and they were not very positive about me getting better, so my mum sent them away and said that they had no choice but to make me better. That was a very sad day as my mum was crying all day because she was worried and then when Josh came up to visit me after school he was very sad as well so I decided to get some sleep that night and I think that helped me, as after a couple of days and with lots of medicine and lots of physio, I started to breathe a little easier and I could see my mum smiling again, which is always a good sign. My mum and dad asked the hospital if they could bring me home with my line in and look after me at home with the help of the outreach nurses and my chest doctors said yes, as they know I like my own bed much better than the hospital ones as they are a little uncomfortable.

So we are home now and slowly but surely I’m starting to feel a bit stronger each day. My consultants think it will take at least 6 weeks for my lung to repair itself so I’m still on lots of different medicine to protect it, but at least I’m at home. My mum and dad keep telling me that I’m a good girl for sharing all the time and I didn’t know what they meant and then they told me that Ruby had caught my chicken pox, so now we are both spotty but at least I know how to share!

Anyway I hope you have all had a nice January and I’m really hopeful that February will be much better, as it is my dads birthday so I’ve got to start planning his cake. Unfortunately my mum isn’t as good at cakes as my dad but I can’t ask him to help haha!

Thank you this month to Claire for your lovely hand made get well card that must have taken you so much time, I loved the design it is so girlie and pretty. I also received a fabulous postcard all the way from Florida from Liz and hearing about her adventures brought lots of happy memories back for me and my mum when we were reading it. We just hope we get to go back to meet Mickey again one day. I loved my pink spotty card that came all the way from Scotland as well, it’s my favourite colour as you know, I do hope you got your biscuits made in the end Tyrie. Dominic your letters are brilliant – me and my family love listening to your adventures and thank you so much for your gifts that come along as well, we all loved our surprises, thank you. As always, Dottie’s letters make us smile, but I think the snow angel is my favourite. Jenny, I’ve been thinking about your nails for your wedding and me and my mum think a nice French manicure would look lovely on your big day. Thanks for all your lovely words over the last month and showing such care to me, we hope you and Ben are still having lots of fun and my mum can’t quite believe how many animals you have. I love my music cd that Terry made for me too, thank you so much; it is great listening to it with my lights on. Penny, thank you so much for the paper mache pig, me and Ruby are going to enjoy getting messy with that as soon as I feel up to it.
Thing have been very bleak this month and some days are harder than others, so when you receive bad news about your child lying there and you know that things are completely out of your control, it is the worst feeling in the world for a parent. Thank you to everyone who sent get well wishes to Holly this past month it has been so hard and when I receive a wish message to know that someone out there cares and is willing her to get better as well, it is just the tonic you need. Joshua and Ruby have just as hard a time when Holly is in hospital as they are passed from pillow to post and not knowing when they are going to see their mum and dad next is really difficult, so when they receive some post and it lifts their day, it is so lovely to see. Thank you again this month for helping to make a very bleak month in our life a lot brighter.

Update 22nd January 2011

Things have been really bad here and we had to call an ambulance on Tuesday. Holly has got bad pneumonia from the chicken pox and her right lung has collapsed. They said on Wednesday that she might not make it, but thankfully she has done what she normally does and turned it all around on Friday. She seems to have turned a corner thank goodness.

Anyway, I’ll keep you posted how it’s going. It’s been really traumatic for Josh as well this week as he understands what’s happening so he’s been really worried and asked me to promise not to let anything happen to her. So we are hoping for a better week next week all round.

Update 14th January 2011

Holly has broken out in chicken pox tonight!

Update 13th January 2011

Happy New Year everyone! Well what a month I have had since we last spoke. It was my birthday on the 6th December and my mum and dad had arranged for a pony to come to my house with a carriage and I was going to put glitter all over the pony and carriage and then I was going to be wheeled on in my wheelchair and taken for a ride just like a princess. But guess what? It snowed and the party people couldn’t get here so my mum was really upset for me but she quickly put plan B into action and arranged for a lovely lady called Polly to come to my house and do a make over on me and my friends which was lovely. We all had hand and foot massages and we got our nails done and then we finished off with a bit of wheelchair dancing. I had a lovely day and really enjoyed myself but I started to not feel too well as the day went on.

By the next morning I was not feeling too great at all so my mum and dad had to phone an ambulance and I was taken into hospital. It turned out I had pneumonia so the doctors put lots of lines in me and started giving me some medicine to make me better. The next couple of weeks were really hard as my breathing was not very good at all and I needed medicine and special massage on my chest and also special nebulizers all the time to help me breathe. My mum and dad asked the doctors if they could bring me home and look after me at home so they said yes and we had some lovely nurses coming out every couple of hours to give me iv medicine and to check I was ok. It was very hard for Ruby and Josh because my mum and dad were doing everything for me so we couldn’t really go out or do anything, but they never complain.

I started to feel a little better just before Christmas but then on Christmas Eve I was not good again so we had to call the nurses back and it all started again. I slept for most of Christmas day but when I woke up I was so excited because Santa had been and left me lots of surprises which Ruby was desperate to help me open. I also got lots of lovely post while I was ill in bed and it was such a treat as the days can be very long when you are not well but too ill to get up. My sister and I loved all our reindeer letters – we loved hearing what they were up to and Ruby was so happy when she found a chocolate coin in one of hers.

Things are still a bit tough as my epilepsy has gone bad again now because of my infection, so my mum and dad have to keep giving me my emergency medicine, but my consultant said I should start to feel better soon. I hope so!

While we were at the hospital yesterday, he told me I have to go in soon to have an operation to have a line fitted in my chest so they can get medicine into me more easily. I’m not looking forward to this but my mum promised me it will all be ok.

Josh and Ruby wanted me to say thank you to everyone who made our first Christmas with Post Pals so special. You are all very very very kind and we all really appreciate it.
So, for now, I hope you all have a good month and I hope next time I write I’m feeling much better.

Oh and just one last thing – Dominic from Cheshire, you are so funny and your letters have all my family laughing! Thank you, love Holly xxxx

As a note from Holly’s mum, I just want to say that our Christmas was lifted this year with all the kind words and thoughts that were sent to us. It is a wonderful escape and the smiles it puts on the faces of my children is priceless, so thank you to everyone who took the time at such a busy time of year to think about us. I would love to have the time and opportunity to write back personally to you all, but I’m afraid I just don’t, but I wanted you all to know that we appreciate everything so much. Happy New Year to you all and once again, thank you from the bottom of our hearts xxxxxx

Update 7th December 2010

Holly was rushed into hospital today with a bad chest and she is on HDU. My mum wanted me to say thank you to everyone who sent Holly lovely birthday wishes.

From Josh (Holly’s brother).

Update 29th November 2010

Well, what a great month of post I’ve had. Firstly I saw myself on the newsletter then I have received some lovely textured paper from Penny which I’m going to use to make some Christmas cards with I think. Then one cold day a parcel arrives for me, Josh, and Ruby, so we had to wait for Josh to come home from school which was really hard but it was well worth the wait as it was full of chocolate. Josh couldn’t believe his eyes ha-ha! Then to top it all off some gorgeous bobbles and hair bands arrived which I really love as some of them jingle so I’m going to wear them to any Christmas parties I go to.

My health has been quite stable this month so I feel really lucky as Ruby has had a bad chest infection so my mum has been keeping us apart to try and make sure I don’t catch it. I hope my health stays well as I’ve got a big week coming up as its my birthday (hooray!) and I’m going to be nine – which considering the doctors said I wouldn’t make my second birthday, it really is a day to celebrate. My mum and dad have said they have got a big surprise for me but they won’t tell me so I’ll let you all know next month how my day goes.

Anyway, I hope you all have a magical Christmas and you get all that you wish for. I’d like to say thank you in advance to you all for taking the time to keep in touch with me. Sometimes when I’ve been up all night with low oxygen or I’ve been fitting all day, it’s such a treat to listen to all your stories and open all your very kind gifts. All of my family send their love too. My brother Josh is doing his first stand up comedy performance in a restaurant where we live soon too so I’ll keep you posted as to how he gets on.

I received a lovely postcard of Dottie this month (I love hearing about all of her tales) and the lovely Kate sent me a card with lots of cupcakes on which me and dad thought was great. I was so happy to see myself on the Dottie newsletter, how exciting was that! I have shown all my family. Christmas has also well and truly started in our house with Ruby’s reindeer letters arriving, she gets so excited and now comes back from nursery every day and asks if Father Christmas has sent any post again ha-ha! Wow what a gorgeous sticker book I received this month too from Lianne and Craig, thank you so so much.
Post Pals has put a real sense of excitement and joy into our house, so thank you to everyone, you are all wonderful people.

Take care everyone, lots of love Holly xxxx

Update 10th November 2010

Well what a lucky girl I’ve been this month to receive such lovely card letters and gifts. October has been really busy as I have had lots of hospital appointments so its always nice after a long day at the hospital to come home to some lovely post to read to cheer me up.

I had my little sisters’ birthday party to look forward to this month and we had a great day at her Toy Story party. My mum painted my face with pretty flowers on and lots of glitter and my Auntie Rach got dressed up as Jessie from Toy Story and surprised Ruby with a Barney the Dinosaur cake which I helped my dad to make. Unfortunately I had a big fit half way through the party so I had to sleep the rest of the party but I had a really good time while I was awake. My new medicine is helping me lots with my fits now.

I don’t know about anybody else but its gone really cold up here now so I’m finding it hard to get out as much now as I struggle with my breathing when its really cold, but we did go to the cinema the other day because its nice and warm in there.

I also entered a completion at my children’s hospice to have my picture used on their Christmas cook book which was a gingerbread man made with my finger prints and guess what – I WON! Hooray! So I had my picture in the local paper with the chef Marco Pierre White which was a nice treat.

Anyway, this month I’ve got to start thinking about my birthday as my mum is wondering what we can do for the day. My mum is looking at special treats for me to do so I’ll let you know in December.

Holly received a letter all the way from America this month from a very kind person called Karli and she loved her stickers, we have put them around her notice boards. Also Ruby and Holly love to hear all the adventures of Dottie and all the family. We also love to see Hello Kitty landing on the door mat. Oh my goodness how lucky has Holly been this month! She has received some lovely gifts. Claire sent her a fabulous story CD which we have listened to lots, and then we had an amazing pair of panda bears that say ‘I love you’. Holly has responded really responded to them and we put the panda around her hands and she likes the vibrations from them. Best of all they came all the way from China so a big thank you Liz for thinking of Holly. Then along came Halloween and I must say there were lots of screams coming from our living room as Josh was chasing his sisters around the living room with his scary spiders. Sarah, thank you for putting so much hard work into Holly’s Halloween card, she loves feeling lots of different textures.

Again a big thank you to everyone who has thought about me and my family this month it really means so much. I know my mum would love to reply to each and every one of you personally but I need lots of care through the winter so my mum dads’ days are really long looking after me and my brother and sister. She wants you to know she really appreciates everything.

Update 1st October 2010

I started September quite well and me and my mum went on a face painting course together which was really fun, but my mum keeps painting my face now! My favourite was a Hello kitty design. I also got invited to a special night by Liverpool fire brigade, as they wanted to present my children’s hospice with a great big cheque, which was lovely for them.

However, as the weather seems to have got colder, my chest has been quite bad lately and I’ve also had lots of problems with my epilepsy, so my mum and dad took me to hospital where the doctor has given me 2 new medicines to try which seem to be working at the moment. It has been hard for me to get out of the house over the last couple of weeks, so I’ve been keeping busy at home doing lots of baking with my Dad, and I’ve also had lots of manicures which has been really relaxing. Josh and Ruby have also enjoyed eating all the cupcakes.

Both Josh and Ruby have loved receiving their special letters and gifts too, so they wanted me to say a big thank you to everyone for them.

I have just finished off September with some really bad news, as one of my friends has just gone up to heaven and I am going to miss her lots.

Post Pals has made my weeks a lot brighter though, it’s so exciting for me and my brother and sister. I received lots of gorgeous hand made cards which must have taken so long to make, so I want to say a big thank you to everyone who sent me cards. I loved reading lots of interesting and funny letters this month too – I love hearing all the tales that Spotty’s sisters and brothers are getting up to and I also got a lovely picture of Barbie sent to me coloured in so nicely by Jodie. I was so happy to receive such lovely thoughtful gifts from all the kind people this month. Sarah made me a lovely door plaque with my name on and I listen to my personalised princess CD almost every day – my favourite song is Beauty and the Beast, I think. I have had lots of messy time over the last couple of weeks and we have lots of birthday cards to make for our family so it has been fun.

I hope you all have a great October – I’ve got my little sisters Toy Story birthday party to look forward to so I’ll let you know how it goes next time.

Much love, Holly xxxxxxxxxxxx

Story written 2007

Jack was diagnosed with Cystic Fibrosis at 2 1/2. He was poorly from birth and has always suffered from digestive problems. When he developed a cough after a cold at 1 year old that wouldn’t go away, we knew something was wrong.

At Christmas time in 2006, Jack was taken to hospital with meningitis. While there, the doctor did a chest X-ray which showed the left lower lobe of his lung was collapsed due to an ongoing undetected chest infection. It was then that the doctors looked through all his medical history and performed a sweat test that came back positive. He was diagnosed in February 07.

Since then he has had a lot to deal with, he’s had numerous hospital visits and treatment but he’s trooped through it all and is still smiling!

Update 4th October 2022

I just wanted to let you know that now Jack is 18 and so much healthier, I think its time for us to move on from Post Pals and let another family have the amazing experience we have. Thank you so much for the support and smiles we’ve had over the past 15 years. 

Update 25th March 2022

Jack is doing well at the moment. He’s taking some time to get to grips with college and life after school. He hasn’t been admitted to the hospital for a year! Kaftrio has changed his life!

Update 18th June 2021

Jack is doing quite well with his health at the moment but is finding his transition from school hard. He’s looking forward to the summer holidays when they come and then looking forward to college in September. Thanks to everyone who sent post to the children. It means so much.

Sorry the update is a small one, our covid world is a small one and not a lot happens, which we’re thankful compared to the health dramas of past years!

Update 9th August 2019

Jack had spent another period in hospital, he caught what was possibly viral meningitis from me (Charlotte) and poor Harry got it too, this on top of the usual CF problems with his chest and high blood sugars. 

He is likely to need another portacath soon too and is still struggling to find a dressing that doesn’t make his skin react! He is really enjoying Friends at the moment, the classics are the best! 

Thanks to everyone who has sent the children post this month.  

Update 2nd July 2019

This year has been very much the same as last, gruelling hospital admissions and seemingly nothing left to be for for Jack but to wait for a decline until he qualifies for other treatments.

My own mental heath has really taken a tumble as well and after all these years it’s finally becoming too much.

I am starting to feel a bit more human again though so hopefully the only way for me in that respect is up.

Thank you for being there in the background, the cards and odd gift still come through the post and make us smile.

Update 2nd April 2019

Jack has spent a whole month now having frequent, painful bowel obstructions and the treatments give him no more than a few days relief before it comes back, we’re working on a longer term plan to try and stop it happening. Things are tough at school with him having had so much time off recently. 

We have some new guinea pig friends now though, that all the children adore. 

Update 10th September 2018

Jack has been really unwell, he spent the whole of the summer holidays in the hospital and Harry, Johnathan and Olivia spent theirs in childcare. Jack had a serious inflammation crisis and a bronchoscopy revealed one of his lungs packed solid with infection, we’ll go in for IVs more regularly now, every 8 weeks at the least.

I’m gutted that we missed the holidays, This has been a hard year for us, especially with regards to Jack’s health and the break would have been so welcome.

Update 24th July 2018

Jack has been really quite unwell recently. He’s had so many weeks and whole days in hospital having all sorts of tests, he keeps spiking fevers and feeling really unwell and no one knows why.  He also has a declining lung function and a wet cough so the Dr’s are getting him in for a bronchoscopy and CT scan. I’m not looking forward to those results!

Jack has also recently had a blood glucose monitor on for a week which shows he has CF related diabetes (very mildly) so he will also be starting insulin. It will be a tough few months for him after an already hard few weeks.

Thanks to everyone as always who has taken the time to send post to Jack, Harry, Johnathan and Olivia this month.

Update 3rd June 2018

As always a huge thank you to everyone who has taken the time to write and send post to the children. We’ve all had a really tough war since Jack has had his gastrostomy fitted. He’s also started steroids which has meant his immune system is lower and his lungs have grown a lot of new and strange bugs! He’s about to go back into hospital for another ‘tune up’.

Chessington was amazing, as always. Sadly, Jack became quite unwell overnight and during the second day, but still really enjoyed the rides and the park.

Jack has had a really difficult time at school due to all the time missed and that combined with a lot of hospital stays has meant all your post is really making him keep smiling. Harry, Johnathan and Olivia have loved everyone’s post as well and it’s helped to keep their spirits up when we’ve been away on inpatient stays.

Thanks again for the amazing work of everyone at Post Pals.

Update 3rd March 2018

Jack has had a month of ups and downs. He went into hospital to have a gastrostomy fitted which went well and with the aid of some amazing staff at the Royal Brompton we got him through surgery with no major bother, he’s adapted well to the peg feeds,so hopefully he’ll gain some weight now.
His chest isn’t as good though, he had a very sudden and significant dip in lung function whilst in hospital and it’s been discovered that he has small airways disease, he’s on a whole new bunch of medication to add to the already huge amount he’s on and we’ll be in close contact with the team to find out what’s next.

Update 4th January 2018

Jack has had a really tough year, his lung function continues to decline.Despite him putting everything he has into gaining weight his time is up and the hospital have decided he has to have a gastrostomy fitted in March (Mum’s Birthday of all dates!) This has really upset him and brought up all sorts of anxieties and concerns. He has had a bad bout of pneumonia as well this year that gave us all a real fright. We keep plugging on with the IV antibiotics every 3 months, but he is slowly becoming resistant and needing them more and more.

Update 16th November 2017

Jack isn’t all that well to be honest, he’s spent the majority of the last few months in hospital and after  bad pneumonia and collapse in his lung he’s struggling to bounce back.

He’s still needing to put on weight, so we’re plugging him with lots of high fat foods. (Crisps and chocolate and pizza being the favourite)

Update 30th April 2017

A huge thank you for the boys post recently, Jack received a lovely Bearhug box today and Harry has been receiving such amazing monthly project parcels and they’ve all had some fantastic cards and letters. It’s going to be a really hard time in the upcoming weeks,Jack is going back in next week for a minimum of 3 weeks (locally and London) but probably longer, until they get his digestive and weight issues under control.He’ll also have his portacath replaced and a course of IVs. We also have Harry going though an assessment for autism, so we’re all struggling at the moment. Thanks again for all the love and support.

Update 7th January 2017

Jack is doing well. We spent a week in Florida for his Starlight Wish, and the sun and swimming and running around Disney seems to do him the world of good! The new medication he’s on seems to be keeping him a lot more stable than he was and long may it continue. Annual review next month so fingers crossed it’s a positive one.
Thank you so much to everyone who thought of us over Christmas. We really enjoyed your cards and gifts, the kids were truly spoilt!

Update 13th September 2016

Jack has started high school and is having a really hard time because he doesn’t want to feel ‘different’ because of cystic fibrosis. His last clinic was excellent, his lung function is holding steady and his weight is up a bit, so I hope this sudden shake of his confidence doesn’t effect that.
He’s looking forward to opening all the lovely cards he’s received for his birthday on Thursday, so thank you for those. We’re looking forward to Chessington, too.

Update 9th August 2016

Jack is alright at the moment. Still coughing away merrily, but that’s fairly standard. We’re enjoying the summer holidays by relaxing and having a break before high school starts in September. We’re all really excited for the Post Pals Chessington trip, which is very close to Jack’s birthday and will also be the weekend before IVs start again.

Jack hasn’t started insulin as previously expected because the team felt the changes in his blood sugars were only minor. We are looking at the possibility of a feeding peg instead to try and bulk him up a bit.

Jack and Harry have been playing Pokemon Go and would love to hear about anyone else playing and what you’ve caught.

Update 15th July 2016

Jack is reasonably ok, he had a scary moment where he was quickly taken into hospital and started IVs after a sudden decline in health.He bounced back quickly and spent a week locally in hospital and then a week at the Brompton, where they fine tuned some of his medication.
He’s 3 weeks post IVs and his cough is back but we’re resigned to this happening now.
He’s starting High school in September, so emotions are running high, as he leaves his friends and teachers behind and starts out as a little fish in a big pond.
He’s hopefully going to have a gastrostomy fitted soon to help him put on weight, as he’s really struggling to gain weight.
Thank you for all the lovely post this month.

Update 5th June 2016

Jack’s chest is quite bad at present, he will also be starting insulin as his test results came back showing the beginnings of CFRD, he’s in desperate need of some IV antibiotics!

Update 2nd April 2016

Jack has recently had 2 weeks of IVs and blood sugar monitoring done, he is still coughing and the cystic fibrosis team are stumped as to what to do with him, they’ve exhausted all options. They don’t feel surgery to remove the badly affected lung is worth the risk of the operation for a small benefit. They’re going back to The Brompton to have a talk to all the specialists there and see if they can come up with anything, we’re going there in June for the next 2 week set of IVs.

Update 10th February 2016

Jack continues to struggle with a constant very wet cough, he’s started using a physio vest this past few days, he loves the shaking, it makes him sound like a robot!
The local team have asked the Brompton Doctors to see him, because they’re stumped as to what to do next.
He’s started medication for some bugs he’s grown, so fingers crossed they’ll have some effect.
Thank you for the boys post they’re always so pleased to see that post has arrived for them.

Update 21st January 2016

Jack isn’t all that well, he had IVs up until Christmas Eve, then we went on holiday ,but after a week he was back to having a bad, wet cough, breathlessness and feeling generally unwell.
We spent New Year’s Eve in hospital. I’m hoping that we might get a plan of some kind soon because at the moment Jack isn’t improving whatever we try and he’s getting quite disheartened and low.
Thank you for all the lovely Christmas cards and gifts and the fab sweet boxes! They’ve really cheered Jack up.

Update 5th December 2015

Jack isn’t doing all that well at the moment, his upper right and middle lung has collapsed slightly and he’s really struggling to keep it clear, empty and pain free. His cough remains bad and he’s been in hospital having early IVs. He remains in good spirits as always though. Harry however is increasingly struggling as the sibling of a child with a long term illness and he worries a lot about Jack and struggles to talk about it.

Update 1st November 2015

Jack isn’t doing all that well unfortunately, he’s got a very bad cough and has been getting a pain in his chest, he’s having 4+ sessions of physio a day which is exhausting for him and us.

He’s enjoying his new school and he has joined the scouts which he’s having a lot of fun at.

Thank you for the boys post this past month.

Update 24th October 2015

Jack received loads of lovely birthday cards and a couple of gifts to make his birthday a bit brighter in hospital so thank you for everyone who took the time to do that for him or to write to Harry.

Unfortunately Jack isn’t doing too well at the moment, the excessive bronchiectasis is causing him to be in pain and coughing an awful lot and these doesn’t seem to be an awful lot we can do about it. IVs are being brought forward to late Nov/early Dec time in the hope that he’ll be feeling a bit better over Christmas.

Thanks again to everyone who takes the time to write to the boys. They love getting post through the door especially jokes and funny pictures or stories. 🙂

Update 17th September 2015

What an astounding amount of beautiful cards for Jack on his birthday! Thank you everyone, it turns out having a birthday in hospital doesn’t have to be so bad after all!

Update 8th September 2015

Jack and Harry have started a new school and are enjoying it a lot.

Jack is in hospital on the 14th September for 2 weeks of ivs and some minor surgery, but it’s his 11th birthday the day after we get there. He’s not going to be able to do anything much this year to celebrate, so that’s a shame.

He’s growing some new bugs in his chest which aren’t common ones, so we’re playing the waiting game to see what we need to do about it. Fingers crossed the ivs help him to pick up and we can get him back home and back to school as soon as possible.

Update 6th August 2015

Jack is about the same as always at the moment, he is still having 3 monthly IVS and his cough is still persistent.

Jack and Harry are starting a new school in September which I’m sure will be exciting for them once they settle in.

We’re spending the summer holidays just relaxing and having some quiet time at home, as we’re all quite tired at the moment.

Update 1st May 2015

Jack is about the same as before and struggling with an ongoing wet cough. We’re keeping going with all the daily medications and physio though which is all we can do unfortunately. Jack will be going back in to our local hospital in June for iv antibiotics for 2 weeks.

We’re delighted with the arrival of our fourth and final baby in April. We’ve called her Olivia and all 3 boys are very proud to have a baby sister.

Update 4th April 2015

Jack has had a really tough couple of months, he’s been into the Brompton for a Bronchoscopy and 2 weeks iv antibiotics. We found out that he has severe bronchiectasis in his upper right lung which is causing a lot of infection and growth of pseudomonas. He’s started some new nebuliser antibiotics which might hopefully help but it has meant our daily slog just got a whole lot harder.

In more positive news, we are expecting a new baby very soon so we’re all excited about becoming a family of 6.

Update 31st January 2015

Jack is still struggling with his chest and we’re going to London for a week soon for a Bronchoscopy, CT scan, IV’s and a general thorough investigation to see if we can make headway with getting his lung function up and his cough gone.

The boys really enjoyed their balloons in the post! Thanks for all the post and the lovely gifts and cards at Christmas too.

Update 29th October 2014

Jack has had a mixed month. He has a bad cough at the moment but isn’t due IVs until December. He’s also struggling quite a bit to settle into his new year at school and we are trying to get some help to work out why and how we can support him.

He had lots of lovely birthday post in September so a huge thanks to everyone that took the time to write to him.

Jack and Harry are both looking forward to Halloween and celebrating firework night with their little brother who will be 2 on that day.

Update 29th July 2014

Jack is doing well, he’s just had another course of IVs so we have a while (3 months) before the next. His cough is fairly dry but lung function is still quite low.

Thanks to everyone who has sent us messages, cards and gifts this month.

Update 30th April 2014

Jack is doing ok. His cough is remaining infrequent and he’s keeping up with physio and medication.

Thank you to everyone who sends the boys post, they really enjoy it and it really cheers them up. Harry has had a lot of bullying so it’s nice to see him smile at the things you all send. Jack likes to open his post after getting his medicine done and he’s feeling a bit tired and grumpy.

Update 11th April 2014

Jack had his annual review in March and it wasn’t good news. His lung function has dropped a significant amount, he’s growing Pseudomonas on his chest and he’s got a really wet cough. He’s been in hospital on IV antibiotics since then and came home a few days ago. He’s feeling a bit better and I think this last admission gave him something to think about now he’s getting a bit older and can understand more. We’re trying to keep him active and aid his physio with little games that get him running around and working his lungs hard to make it more fun.

Update 28th January 2014

Jack had a tough year last year. At the end of the year he grew some nasty bugs in a forced sputum sample. He has a bad cough again and will be spending half term having I.Vs. He’s getting to the age where he is feeling quite glum about having CF now he is beginning to understand it, so it’s quite hard at times at home.

Update 1st October 2013

Jack is doing ok at the moment and he’s now 9! Thank you everyone for his birthday cards/gifts. He’s riding his new bike as much as possible so hopefully the weather stays dry. He’s glad to be back at school with his friends and he’s enjoying his new class.

Update 30th August 2013

Jack is doing ok and his current medication/physio routine seems to be working.

He’s looking forward to going back to school. He’s still playing a lot of football and is excited for his birthday as he’s learnt to ride his bike this summer.

Update 30th April 2013

Jack is just coming out the other side of IV’s, hopefully his cough will stay away and his lung function will begin to improve!

Update 30th March 2013

Jack isn’t great at the moment, he will be admitted onto the ward on the 8th April for ivs to try and shift this pesky cough! He is also currently being assessed for various learning difficulties at school so he’s having a tough time. He is still very smiley though and both the boys really look forward to the post arriving everyday incase there is a Post Pals letter for them! Jack and Harry both really enjoyed designing t-shirts and baby grows (for Johnathan) with the fabric pens too.

Update 11th March 2013

Jack is doing ok, though he has a bit of a cough so we’re trying to get on top of that, but it may result in some iv antibiotics. We finally have Jack’s annual review on Monday, so let’s hope the snow doesn’t postpone it again!

Update 4th January 2013

We’ve had a tough month or two. Baby Johnathan was in hospital for 2 weeks with Bronchiolitus and Jack had a bad cough/cold, plus Jack and Harry had tummy bugs. We’re all on the mend now though.

Jack has his annual review at the end of the month and he’s started a new anti fungal nebuliser, fingers crossed everyone please that it works and gets rid of this ongoing bug!

The Christmas cards/gifts were really great and we’re really grateful and touched that so many people took the time to think of all 3 boys. Post Pals really is an amazing charity that makes such a big difference to our lives.

Update 29th November 2012

Thank you to everyone who has taken the time to think of the boys this month, it has been especially welcome as we’ve had a new arrival! Baby Johnathan arrived with a bang on firework night and Jack and Harry are enjoying being big brothers.

Jack is reasonably well at the moment, he has a slight cough and we’re awaiting some medication to be issued by the hospital.

Thanks for Harry’s birthday cards, he had a really lovely day!

Update 9th September 2012

Jack has had a bad few months in the hospital, but hopefully things are more under control now and we’re just waiting on some test results to see what bacteria is growing in his lungs.

Jack is excited for his birthday next week and both boys are looking forward to having a new little brother in November!

Update 20th June 2012

Jack is currently in hospital, his bad cough continues and his right lung is struggling. After a few weeks in our local we’re being transferred up to London on Monday for a Bronchoscopy and to see the consultant up there for some new ideas and to try and get to the bottom of this.

Your post continues to be of comfort and a joy to both Jack and Harry so thanks very much.

Update 9th April 2012

It’s been an ok month for Jack. We have had lots of attempts at a Bronchoscopy and Iv’s but they keep getting cancelled due to other things happening at the hospital. We are all well though and Jack is ticking along in good health.

Thanks for all the lovely post, both this month and every month.

Update 11th January 2012

Jack is doing well at the moment, he is cough free and finally taking tablets!

We had a lovely Christmas break in Scotland with friends and the boys are now back at school.

They had so much really lovely post over Christmas so I would like to thank everyone that took the time to send to them.

It’s annual review time again this week so please keep your fingers crossed it goes well.

Update 9th May 2011

Jack is doing ok. He had a CT scan which revealed quite a lot of damage in one of his lungs but the rest was good. His cough has finally cleared up. He is enjoying school and the lovely weather. Thanks for all the post this month.

Update 3rd February 2011

Jack had his annual review this month. It is showing improvements in the changes in his lungs which is fantastic! We are however still battling with this cough that just won’t go!

Thanks to everyone for the lovely post this month. Jack and Harry are looking forward to Pancake Day!

Update 3rd January 2011

We all had a lovely Christmas and Jack is doing ok at the moment. Thanks so much for all the lovely gifts and cards that people sent.

Update 25th November 2010

Jack has an ongoing cough so will have to have a bronchoscopy. He is ok in himself though and is enjoying school.

Thanks for all the cards, letters and gifts.

Update 1st November 2010

Jack is doing ok at the moment – he has just finished 2 weeks of IV’s and is now looking forward to Christmas!

We went to see Disney on Ice and it was amazing!

Thanks for the Halloween gifts this month – they were fantastic!

Update 1st October 2010

Jack is ok at the moment; he is enjoying school and has joined construction club and choir. He also has a new ineb which is making life easier! He had a lovely birthday and thank to everyone who sent him a birthday smile.

Update 30th August 2010

The summer holidays have flown by and jack still has this niggly cough.

We had a fantastic day out at Chessington thanks to some tickets from Post Pals and we all had such a good time! The boys both still have their pillowcases on their beds from Post Pals too – they really loved them. We’ve also had lots of lovely letters and cards and gifts this month so many thanks.

Update 1st July 2010

Jack has been very poorly this month; he has had 2 weeks of i.v’s but is still coughing badly. He isn’t eating and is very tearful. We have 2 weeks left of oral antibiotics then if there is no improvement we will be going up to London to have another Bronchoscopy. Jack is still playing and going to school but is very tired and chesty right now.

Update 1st June 2010

Jack isn’t too bad, he will be having iv antibiotics in hospital for 2 weeks on the 8th June and they are routine, but he does have a cough that he cant shift as well at the moment.

Update 2nd May 2010

We have had a very tough month this month as Jack’s Nan (my Mum) passed away during surgery so we have all been grieving and in shock too. Jack was so very close to his Nanny.

Jack is continuing to do well though no changes of the CF front. He is enjoying school and his topic which is ‘under the sea’.

Both boys have really enjoyed the influx of post they have received this month, thank you everyone.

Update 8th April 2010

Jack is doing ok at the moment. We have had a tough month as his Nan (my Mum) is in hospital waiting for a serious heart operation, but we have been keeping our spirits up as best we can.

Jack and Harry loved the Bunny that was adopted for them, it was a lovely gift.

Jack is still enjoying school and keeping well.

Update 4th February 2010

Jack is continuing to do well and his annual review was really positive with an improvement on this time last year. Our next challenge is to get him to swallow tablets, so if anyone has any tips, please let us know!

Update 4th January 2010

Jack is continuing to do well and we had a lovely Christmas. Thank you to everyone who took the time to send Jack and Harry something.

Update 28th November 2009

Jack has had a tough month, he was admitted to the Royal Brompton in London to have his Portacath replaced and we have just finished 2 weeks of I.V’s but now hopefully things are back to normal (whatever that is!).

Thanks for all the lovely gifts and cards you have been sending and thanks for not forgetting Harry, we really appreciate it!

Update 1st November 2009

Jack is in hospital at the moment, he has had to go to London for an operation to change his Port and a Bronchoscopy.

Update 29th September 2009

I would like to thank everyone this month who wished Jack a happy birthday. He had a lovely day and was really pleased to receive all your lovely post.

He also started school and is getting on really, really well.

We are going into hospital tomorrow for a Portacath rescue mission as Jack’s isn’t working as well as it should right now, so please wish us luck!

Thanks again.

Update 9th September 2009

Jack is doing ok though he has still got a bit of a wet cough which is hanging around.

He is very excited to be turning 5 this month and starting ‘big’ school.

We had a little holiday which was lovely.

Thanks to all who have sent post this month. I would be really grateful if anyone sending post to Jack could add a little note to Harry as he is feeling a little left out!

Update 4th August 2009

Jack has a bad cough at the moment and we are trying to get to the bottom of it! He is fine in himself though, still a ball of mad energy!

He is looking forward to school and has got his entire uniform ready now. He just has the important task of choosing a lunch box left!

We are going to Devon for a little holiday soon so we are all looking forward to that.

Thanks to everyone who sent post this month.

Update 1st July 2009

Jack is doing well and he is looking forward to starting ‘big school’ in a couple of months.

We’re also going on holiday for a week to Devon to hunt for dinosaurs which he is looking forward to.

Thanks to everyone who sent something to Jack and Harry this month.

Update 31st May 2009

Jack is continuing to do well. He is having routine I.V’s this month. He is getting excited about starting school in September.

Thanks for all cards/letter/gifts this month and everything for Harry too.

Update 1st May 2009

Jack is doing well at the moment. He is enjoying the good weather and has been spending a lot of time running around outside which is great physio! He has been visiting his Primary school to get him used to it for when he goes in September and he is very excited.

Thank you for the post and Jack really loved the bear he was sent.

Update 3rd April 2009

Jack has had a few different coughs and infections but is still in high spirits.

Update 1st March 2009

Jack is currently waiting to see if he will need some I.V’s in hospital. He has started coughing after being taken off his medication at his annual review.

Update 2nd February 2009

Jack is continuing to do well. He had his annual review last week and he is showing no signs of getting worse. His doctors have stopped a lot of his medicines to see how he will cope without them – we’re a bit worried by this but are hoping he stays well without them.

Thanks for all post that has been sent this month.

Update 1st January 2008

Jack is dong well at the moment.

We had a really good Christmas and i would like to thank everyone who sent a card/gift or message to Jack and Harry – it was very much appreciated and they loved everything they got.

Jack is still having 3 monthly IV’s and will hopefully have his annual review in January.

Update 28th November 2008

Jack is still doing well and he is really looking forward to Christmas.

He will be having 2 weeks of i.v antibiotics from the 2nd December so he is a bit sad to be missing school.

Merry Christmas to everyone.

Update 1st November 2008

Jack is really well at the moment, his Doctors couldn’t be happier with his progress and current health.

We had a lovely holiday this month and Jack and Harry saw Bob the Builder, Fireman Sam, Barney and loads more of their favourite characters. We had a really lovely time.

Jack is due an annual review sometime soon so hopefully the results will be positive.

Thanks to everyone who has sent such lovely cards/gifts and letters to Jack, we are all really grateful that you guys take the time to make him smile each week.

Update 30th September 2008

Jack is continuing to do well. He has started a new nursery and is making lots of new friends. We are going on holiday in 2 weeks and Jack’s really excited as he will be seeing Bob the Builder! He had a lovely birthday party and we would like to thank everyone who sent cards and gifts.

Update 30th August 2008

Jack is really well at the moment and he will be starting at a new school in a couple of week’s time.

It’s Jacks birthday on the 15th of September and he is having a surprise party!

Thanks again for all your lovely cards and gifts.

Update 1st July 2008

Jack is doing really well at the moment. I have been trained to administer his i.v’s so he can have them at home rather then spending 2 weeks in hospital every 3 months. He is cough free for the first time since he was diagnosed, so we’re keeping our fingers crossed he will stay well for the time being.

Update 29th May 2008

Jack is doing ok. He will be in hospital from the 2nd June for at least a week for i.v’s.

Jack has been having lots of fun on holiday and he has learnt to swim!

Update 30th April 2008

Jack is doing so well at the moment; he will be starting home i.v’s soon which will be really great. He will be going into hospital for a week on the 2nd of June then coming home for a week on home i.v’s then hopefully all his other i.v’s will be at home if he is well. His port has been a godsend, just one tiny prick and his i.v’s can be administered without any pain or tears and no theatre!

Jack still really loves getting post and especially likes photos of people’s pets and hearing about their lives. Jack’s brother Harry is now older and would like some post to read as well please if possible!

Update 4th April 2008

Jack spent last month in hospital and had a portacath fitted into his chest. This will give the doctors direct access for all future antibiotics. Hopefully this will make a huge difference as Jack has had a lot of problems in the past keeping lines and canulars open. Jack is back home now and is well again! He is currently off school for 2 weeks for half term.

Update 28th February 2008

Jack has had a tough month this month. He has been in hospital for 3 and a half weeks. He had IV antibiotics for a chest infection and also had a portacath fitted for future use. He is still very sore but getting there and has been allowed home today so he’s really happy.

Hopefully we can now have a quiet period where he will stay well for a while. He will also be having 3 monthly IV’s now to keep things under control.

Thanks to everyone who sent Jack and Harry post this month, we had a tough time in hospital so it really cheered us up. Postpals really has made a difference to our lives, when things aren’t going well there is still post to look forward to.

Update 31st January 2008

Jack isn’t well and he is going in to hospital for 2 weeks of intravenous antibiotics on Monday and then he will be transferred to London to have a portacath fitted.

He had a lovely Christmas and we would like to express how much all the cards and parcels we received meant to us, especially Jack who loves receiving your post! Thank you!

Update 6th December 2007

Jack is not doing brilliantly at the moment. He has a reoccurring cough; he may have to have regular i.v’s at 3 month intervals starting from January.

He has his annual review in London next week and we’re hoping it goes as well as possible.

We have had a breakthrough with Jack’s nebulizer as he isn’t crying anymore and just accepts it, so that’s a big struggle over each day.

I just want to thank Post Pals; it’s a fab organization that brightens the day of a child who can’t understand why life’s not great some days. Jack knows that whatever treatment or procedure he has to have he will always have Posty to look forward to!

Update 5th November 2007

Jack is well. He recently had 2 weeks in hospital having i.v’s as he has got psudemonious (sp?) He is now taking daily nebulizers and having more antibiotics. He doesn’t like his Neb’s as he has a fear of masks, but we are hoping he will get used to it like he did his other medication. He has lost a lot of weight so he has lost his little pot belly, but all in all he is feeling a lot better after that dreadful cough he had.

Update 16th October 2007

We have just found out Jack has an infection and is being admitted to hospital for 2 weeks on Thursday 18th Oct until 1st Nov for I.V antibiotics. I am sure any extra smiles and tlc would be much appreciated.

Update 5th October 2007

Jack celebrated his 3rd birthday in September. Thanks to everyone who sent him birthday cards and gifts, he had a whale of a time opening them and showing his friends at his birthday party.

He is ok health wise, apart from a bad cough. If it’s still lingering by the time he is in clinic (October), there is a good chance he will have to go into the children’s ward for 2 weeks of I.V’s. We have stepped up his physio so hopefully this won’t happen.

He is doing well at school and has made a new best friend, which is really lovely to see. He has come out of his shell now he feels well which is fantastic for us to watch. He is a lot more like a normal little boy now; before he was diagnosed he was very withdrawn and quiet.

Post Pals is a fantastic organization. It has really helped Jack to look forward to each day, which was hard for him before. We would like to thank everyone who has taken the time to send anything to Jack, it really brightens his day, especially when he’s feeling poorly. He waits for our Postman everyday to see if there is anything nice for him. He also really enjoys sending the other Post Pals cards and pictures he has made.

Update 23rd August 2007

Since having a Bronchoscopy a few months ago, for which he was anesthetised, Jack has been having nightmares about hospitals and doctors. We have been collecting a doctor’s kit to dress Jack’s dog teddy (Ivy) up in so that he has a companion on his hospital visits!

I just wanted to thank Post Pals and everyone who has sent Jack wonderful cards and parcels! It really brightens his day when the postman arrives with a handful of mail for him. I just love watching him tear open the letters in anticipation and i love seeing his face light up when he finally gets inside the envelopes. Post Pals has made a huge difference.