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:

https://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 2005

Aled was born on the 1st Sept 2003 after 38 weeks of his mum having to control Gestational diabetes. His mum was regularly scanned to check Aled’s progress and after 8 months a date was set for Aleds birth due to his size and because he was in the breach position.

When he was born the only thing that we noticed was that his arm was looking strange. After a couple of hours a Consultant came and explained to us that Aled had VACTERL Association which meant he could have loads of problems. Some of the immediate problems were an Imperforate anus, a large hole in the heart with possible coarctation of the artery from the heart, a missing Radius, 3 fingers on one hand and a free floating thumb on the other hand.

After 18 hours he was transferred from Plymouth to Southampton because of the heart problems. After 48 hours he had an operation to fit a colostomy bag due to his imperforate anus. That same day we found that one of his kidneys was not formed properly and would probably shrivel up and die on its own. He stayed at Southampton for the next 8 weeks while they fattened him up for his heart operation. They repaired his heart in Nov 2003, all went well with the operation but while he was In PICU is heart was failing to recover and slowly we watched as we thought he was slipping away from us. We decided to let our families know that things weren’t too good so we left PICU to make a few phone calls. While we were out of PICU his heart sprang into life and that was the start of a really quick recovery.

Since then Aled has had two operations on his bowel and anus, an operation on his left hand to move his index finger to the thumb position. He also had an operation to release a tethered spinal cord and is now awaiting an operation on his right hand to split the webbed fingers. We have also found out that Aled has Scoliosis and abnormal vertebrae which will also need watching for damage.

No matter what Aled goes through he is still a “proper” boy, into all sorts of trouble. He loves meeting people and enjoys going shopping just to see other people in the shops.

Update 21st September 2012

Since Aled joined Post Pals in 2005 he has really had some great post from you. Post Pals was there throughout a lot of Aled’s surgeries and each of his recoveries, during which time he received letters from all around the world. Please be in no doubt that you as a group made a significant difference in how Aled recovered after his surgeries and for that Gaile and I will always be thankful.

Once again, many thanks for the support you have given, it really has been priceless.

Update 8th April 2012

Aled is doing well with his ACE and Mitrofanoff that he had in July. He still gets affected by infections, but luckily these appear to be less intense.

Aled has been granted a wish by The Starlight Foundation so he is going to New York in a couple of weeks to meet Jake T Austin (Max Rouso) from Wizards of Waverley Place. As you can imagine he is really excited!

Update 27th August 2011

Aled has finally come home! It turns out that he had a nasty infection in both his bladder and his kidney. He has been sorted with antibiotics and has another two weeks of them before swapping to long term antibiotics.

Update 20th August 2011

Aled was admitted to Bristol children’s hospital on the 2nd July for a bladder augmentation. At the same time he was to have the ACE and Mitrofanof formed. It was a big operation with Aled being in theatre for just over ten hours.

Initially all was well until a week after the operation when fluids were introduced to his diet. Sadly this proved too much and Aled was in excruciating agony. In the end they did emergency surgery on Thursday 14th July. This was another 6 hour operation. When we saw the surgeon he said that Aled suffered from serious adhesions which have stopped his stomach from working correctly.

At the moment he remains in hospital with no real chance of coming home just yet. Otherwise he is good though. He is taking it all in his stride and making his mum and dad proud by being as strong as he is.

Thank you to all that have sent cards, gifts etc. They are really appreciated. Thanks also for the box of goodies that was sent to Gaile, this was a lovely surprise.

Update 4th May 2011

Things have been relatively quiet for Aled, he’s had a few hospital appointments but these have just been the routine check-ups.

We are going to Orlando and then up to Washington DC to take part in some research that is being carried out for Aled’s condition.

When we arrive back home we are home for a couple of days, then Aled is being admitted into hospital on the 2nd July for the operation that he should have had in November.

Aled would like to say thank you very much for the cards and gifts that he receives.

Update 1st February 2011

Since we last updated Aled’s page he has had a good Christmas even though he managed to break his arm the week before. So for the second time in 5 years he has spent Christmas with a red cast on his arm.

On New Years Eve he was lucky enough to go to the theatre to watch sleeping beauty. He was even luckier to be invited on stage to take part in a small section with Joe Pasquale. Aled had a really big buzz from this and has now started drama classes and even auditioned for a part in a play during his first session at the drama club.

Yet again though he has been poorly with a chest infection, luckily he is getting over it and is now back in school.

A big thank you to Louise Siddle for Aled’s Christmas parcel, he was over the moon with it.

Update 29th November 2010

Since Aled returned home from hospital he has made slow progress in improving his health. He is back at school but seems to be catching all the chest bugs that are currently around.

He has really enjoyed receiving the postcards and seems to get more decent post than his parents get junk mail.

Update 2nd November 2010

Aled’s operation was cancelled on Monday morning due to Aled having pneumonia. He was put on IV antibiotics and is now on oral antibiotics. We now have a new date in July.

Aled loves having post again and wants to thank everyone for their support.

Aled has rejoined Post Pals.

Update 17th October 2010

Aled has had a relatively quiet 22 months, apart from the follow up hospital appointments. He is now in year 2 of school which he loves and is thriving being at school. He has also started Beavers and he really enjoys going there and even went on a overnight camp with them in July which he thoroughly enjoyed.

He is due to go into Bristol Children’s Hospital on the 30th October and have a surgery on the 1st November. This operation is on his bowels and bladder. He is having a bladder augmentation, a Mitrofanoff and an ACE. We are expecting to be in hospital for 2-3 weeks, and after the operation he will not be allowed to go back to school until at least January. So, as you can imagine, this is a massive operation.

Update 3rd January 2009

Aled had an MRI during December to try and discover why he suffers with pains in his legs; hopefully we will get the results soon.

He was really excited about Christmas this year; he received a video email from Santa, as well as a letter from one of Santa’s fairies which he really enjoyed, as it was left by his bed while he was sleeping.

A special thank you to Aled’s reindeer and Elves who really made a big effort and was really appreciated by Aled.

Also, a special thank you to Julie Barrett and Karen Reece-Mae, who have continued their support.

Update 15th November 2008

Aled had tests on his bladder recently, the results of which we have only just received. It turns out that his bladder is only about half the size of a normal bladder. The bladder neck is thickened and he has spasms when it gets full which causes him to have accidents. He was already on the highest dose possible of his medication, but now it has been increased by 50% which has already caused trouble as the GP won’t prescribe it until she has spoken to the consultant. So we wait to see how the medication will help with the spasms.

Sometime in the near future Aled is going to have a bladder reconstruction and at the same time have an ACE made to help with bowel issues. The down side is that he will have to self catheterize after the op, but on the flip side he will get two operations for the price of one, as the ACE was already expected anyway, so at least he will only have one surgery.

The preparations for Christmas have started, Aled’s list is huge and he is already counting down his sleeps until the big day.

Update 6th September 2008

Aled saw his Plastic surgeon last week to see how his hands are doing after his operation, as well as to check on a problem Aled has with his arm. The surgeon is happy with Aled’s hands but has said that Aled also has an improperly formed elbow on his left arm which means that he cannot rotate his arm enough to do certain things like accepting change from people. This was a bit of a shock to us as parents, as we thought that it was just muscular and needed a bit of stretching… never mind it could have been worse.

On a good note Aled started school 2 days after his 5th birthday, he was really excited about going and so far has really enjoyed himself. Many thanks to everyone that sent a birthday card, he had a major smile when he found out that he had 44 birthday cards. Thanks to everyone that sent a gift too, you are all very generous and thoughtful.

Aled is in hospital on 15th September for a Supa pubic catheter to be fitted before they do bladder tests on the 16th. The outcomes of these tests decide whether he will have a bladder reconstruction or not.
Post Pals is an exceptional website that brings Aled a lot of smiles. He is the first to check through the post when it arrives to make sure that he has his cards/letters first. The generosity of all the people that send cards etc. is incredible, and I thank Post Pals for making Aled so happy with his post.

Update 8th June 2008

Aled has had a quiet time over the last couple of months; his hand has healed well after his last surgery, and he visited Disneyland Paris (again) which he really, really enjoyed. The trouble is that he now wants to go there all the time… if only.

Last month Aled saw his urologist as he has had a lot of problems with his bladder and finding a cause has been a nightmare. It now looks like they have one – some sort of growth on the bladder. This means that he has to have video urodynamics done to check this out and then depending on the results a possible bladder reconstruction. This has been a bit of a shock as we were sort of hoping that his operations were over with, but maybe not…

Preparations are also well under way to getting Aled to school in September. He is really excited about it but mum and dad are anxious about the outcome.

Update 5th March 2008

Thank you everyone that sent Aled a card or gift over the Christmas period, he had a great time with lots of presents and cards. A big special thank you to Aled’s elves and reindeers who made the build up to Christmas an exciting one.

Aled has been in hospital lately to have some plastic surgery on his right hand. He had a lot more work done than was originally expected, but hopefully it will be okay. He had the dressings removed yesterday and his hand looks sore but otherwise okay.

Update 7th December 2007

Aled is currently getting very excited about Christmas, he had an angel visit him while he was sleeping one night (she left some angel dust on the bedside cabinet) and that really put him into the Christmas mood. He is playing Joseph in this year’s pre-school nativity, which we are looking forward to.

We are still awaiting the appointment for his hand operation that we are expecting sometime soon.

At the moment Aled is having lots of trouble with his bladder function, this worries us as he only has one kidney which we want to protect. Hopefully these problems will be sorted soon and won’t turn out to be a nightmare.

Many thanks to Post Pals for their support, Aled really enjoys receiving any mail and keeps it all for people to see.

Hope you all have a lovely Christmas and a great New Year.

Update 3rd October 2007

Another month has gone by and Aled continues to do well with his bowel management, we are changing the routine slightly by changing the equipment that we use, which we hope will make it a bit easier for him.

We had some bad news this month, Aled needs further surgery on his fingers, and this is quite a shame as he had an operation about 18 months ago to separate his webbed fingers but sadly they have rejoined. We have told Aled about the op and he is a bit scared this time (obviously getting older). Hopefully by the time he has it done he will be okay.

Many thanks to all the kind people that have sent cards and gifts; they are really appreciated.

Update 30th August 2007

Aled has had a rough time this month as he is struggling to deal with the intrusive elements of the bowel management. He is out of his nappies during the day though, which is a great confidence booster for him. His next step is to see the plastic surgeons about his webbed fingers; hopefully they can sort something out in the way of separating them.

Aled has had a steady flow of postcards etc over the months but this month has been lovely, he has been really excited when checking the post in the morning.

Update 2nd August 2007

Since Aled’s last update he has had a busy time. At the end of June he went to Cincinnati, Ohio, to a conference about people with VACTERL association. He had a really good time and made loads of new friends, all going well we will meet them in a couple of year’s time when they have the next conference.

These last few weeks have been spent introducing Aled to his new bowel management program. It has been a very stressful time for all of us and we are hoping that things will get easier over the next few months.

Update 10th June 2007

Aled has had a good month so far. He spent a week with his Nan in Wales which he really enjoyed.

He is now set for a busy couple of weeks with an MRI for Hydrocephalus and re-tethering of his spinal cord next week, followed by more hospital and clinic appointments.

After that he is going to Cincinnati for a week so that he can attend a VACTERL conference. This will give him, as well as mum and dad, a chance to meet other families and also to speak to some of the top VACTERL specialists in the USA.

Update 9th May 2007

Aled continues to do well. He has several appointments coming up with general surgeons which we hope will be positive for him. He is also waiting for an MRI to rule out a re-tethered spinal cord as well as to check for Hydrocephalus. He is still a happy and “lively” little boy who wins plenty of hearts. We have just completed his statement process, which was a bit of a nuisance, but hopefully he will get the help he needs at school.

Update 12th March 2007

Aled had a good month; hospital appointments had been quiet but Doctors not so because of chest infections etc. He is now well again and enjoying his time at pre-school.

Update 9th February 2007

Aled did have a quiet month until today when he has come down with a fever and is quite poorly with what looks like tonsillitis. Aled has seen the Urologist about his Neuropathic bladder; he is pleased with the progress at the moment and doesn’t want to see Aled for another twelve months.

Aled has enjoyed returning back to nursery after the Christmas break and is really proud of all his Christmas cards from Post Pals.

Update 27th January 2007

Aled is doing really well at the moment and continues to improve in all areas. We are trying to get him potty trained at the moment but because of his problems it may take a lot longer than initially expected, hopefully things will get easier with bowel management routine but that won’t be until late summer at the earliest. Aled is also noticing that his hands are different as he keeps inspecting each one in turn. We are expecting him to start questioning as to why they are different very soon; neither of us is looking forward to that day.

A big thanks to everyone who sent Aled Christmas cards and a huge thank you to Kate D and Beth Hughes who were Aled’s Elves this year. Aled was really excited about receiving them and was especially pleased with the monkey and power rangers.

Update November 2006

Aled has had a good couple of months, his asthma appears to be staying under control and so far he hasn’t had any serious attacks.

He saw the cardiologist recently who was very pleased with his progress and the reviews are now becoming less frequent.

Aled recently met up with 4 other VACTERL children; it was a good time to see how other families cope.

We are now getting ready for Christmas; Aled is getting more excited and seems to be looking forward to it.

Merry Christmas to you all.

Update 30th September 2006

We saw the orthopedic and plastic surgeon this month to see if there is anything that can be done with Aleds right arm and as expected they have said that things will have to remain the same as any surgery for cosmetic purpose would reduce any use that he could have with his arm.

Aled has spent a few weekends away in the caravan enjoying farm yard walks and egg collecting. He wasn’t too happy when he paid a visit to the dairy farm and the cows decided to do a Number 2 (if you know what I mean) right in front of him… it stunk!

Aled is currently highly interested in the power rangers and any other hero or villain that allows him to dress up.

A big thank you to Karen and Julie for all their post and comments on Aleds website.

Update 3rd September 2006

Aled is well and has just enjoyed a two week holiday in Holland. He enjoyed camping, even if it rained every day (bar 1).

He sees the plastic surgeon /orthopedic surgeon this month to see if they can make some sort of elbow for him as he is complaining of aches and pains in his arm.

At the moment Aled really enjoys dressing up to play and has just had a wooden train track for his 3rd birthday.

Thank you Post Pals, Aled has had a lot of mail and has really enjoyed receiving it. It really does make him smile when he receives a card or message.

Update 31st July 2006

Aled has had a busy month; it started with a meeting with other VACTERL children which took place over a weekend. Then Aled had his cousin and her friend come to stay for a few weeks which was tiring for his mum and dad but very enjoyable for Aled.

Thanks to Julie and Karen for their ongoing support, and a thank you also to Post Pals for your obvious support.

Update 1st July 2006

Aled had a lovely holiday with his Nan and Granddad, but now he has returned home he’s back into a round of hospital appointments. These appointments are to investigate problems with his ankles, as well as ongoing tests to his bladder.

Aled recently started swimming again for the first time since February and is really enjoying it. I think he enjoys getting his mum and dad wet more though!

Update 14th June 2006

Aled is doing well; he is still having tests carried out on his bladder to determine how much control he will have. These tests are likely to go on for a while, but hopefully they will give us a good picture about his future.

He is going on holiday with his Nan and Granddad in June which will give all the family a much needed break.

In July Aled is meeting up with two other VACTERL children; this should be a good time for the families as well as for Aled as it gives us a chance to share experiences.

Aled enjoys opening any cards he gets. We have kept them all so one day we will take a photo of him with them.

Update 15th May 2006

Aled is continuing to do well; he suffers from frequent bad asthma attacks which slow him down (but only for a short while). He has plenty of hospital appointments at the moment as all the reviews seem to come around together. He has just been diagnosed as having a Neuropathic bladder which isn’t a surprise to us because of his spinal issues. Hopefully the consultants can sort out some way of controlling it.

Thank you once again for the lovely gifts and cards.

Update 29th March 2006

Aled’s check-up with the plastic surgeon went well. He had an infection in the skin graft site on his hand so was given some antibiotics by the GP which cleared it up, but we went to see the surgeon earlier than planned in case it had been affected in some way. She had a good look at his hand and was pleased with the results. She also talked about the elbow (or lack of one) on Aled’s right arm; we are seeing her again in September with an orthopaedic surgeon to see if there is some way of making him an elbow. We’ll wait and see.

We had an interview with our local newspaper last week who did an article on Aled and the support group that we’ve have set up in the UK. We also had a radio interview a few days laterwhich Aled’s mum did. She was a bit embarrassed about it but did a very good job.

This week Aled had another bad asthma attack, we think it was caused by the onset of the cold. It proved to be a right nuisance as his mum was minutes away from leaving for work when Aled vomited all over his bed. That is a great sign of him having an asthma attack. It took a few days to get over it but now he is fine, except for the cold that is.

Update 17th March 2006

Aled had his operation to separate his fingers in February. All went well except for an infection which has now cleared up.

Thank you to everyone that has sent emails and cards, Aled really enjoys having the messages read to him and he shows all his cards to whoever enters the house. Many thanks to you all for your continued support.

Update 4th March 2006

Aled went back to have the dressings removed from his fingers last week, it went really well as he didn’t have any anaesthetic (the surgeon normally takes the dressings off under a general anaesthetic) because of a hospital mistake. The skin graft seems to have taken okay and the fingers look okay, just a bit red and swollen. Aled has to go for another check up in about 3 weeks; hopefully they should be all sorted by then.

He had a session with his OT and PT this week, the physio seems to think his ankles need to be seen by a Pediatrist to get an experts opinion. He has also been diagnosed as anaemic so is now on iron supplements.

Update 18th February 2006

Aled went into hospital on the 9th Feb to have his fingers split. The operation went well, but he was really upset when he came out of recovery because his arm was strapped to his chest to stop him from taking the bandages off. Aled has had quite a lot of pain with it this time… his mum says it might be because he is older and feels it a bit more.

Aled go back to Birmingham on Thursday to have the dressings removed on the Friday which he am not looking forward to as it will be a bit sore but it has to be done.

While Aled was in hospital he received a big poster from America which was made up of loads of cards made by children. Each one was wishing him well. It was really smart!

Update 31st January 2006

Aled has had a fairly quiet month with the exception of a few bad asthma attacks. These now seem to be getting a bit better to control which makes life a little less worrying.

Aled has his next operation to split his syndactyly (webbed fingers) on the 10th Feb. This will also include a skin graft from around his groin, so please keep him in your thoughts that day.

Update 30th December 2005

Many thanks to all at Post Pals for such a lovely Christmas and special thanks to Karen who was Aled’s elf; you made his day extra special. Thank you to all the kind people that sent cards, your generosity is incredible. Post Pals has shown us that there are a lot of kind and thoughtful people who will go out of their way to make others happy… Thanks.

Aled has had a fairly quiet time lately, he, as well as his mum and dad have been really touched by the generosity of people around the world. He has received parcels from Canada, USA as well as here in the UK. The support he has been given has been immense. Thank you.

Two weeks before Christmas Aled had what we thought was a chest infection; as usual it started just in time for the weekend so we had to see another doctor rather than his GP. He confirmed that it was a chest infection and gave him the usual antibiotics. After a further 24 hours Aleds breathing was in excess of 60 a minute so we saw his own GP who sent him straight to hospital.

After loads of tests and X-rays the Paediatrician said that it wasn’t a chest infection but a chronic Asthma attack. He was given loads of inhalers and kept in the hospital for the day. The good thing about staying in there for the day was that we got to meet the Plymouth Argyle football players who gave Aled a hat and were about to give him some gloves until they noticed his hands and gave him some sweatbands instead. Aleds Asthma seems to be under control and he was well again for Christmas.

Aled was really excited about Christmas, especially when we placed Rudolph’s glitter food outside on Christmas Eve. When he woke up in the morning he opened his stocking and was really pleased so he shouted ‘thank you Father Christmas!’

We are still waiting for a date for Aleds next operation on his right hand, hopefully that will be soon after the New Year.

Update 19th November 2005

Unfortunately Aled has been poorly this week with a viral infection. Aled also saw the cardiologist this week who says the patch on his heart is really good and doesn’t leak, but he has a leaky heart valve which the doctor will keep an eye on.