Story written July 2020

My daughter Nimrit was born on the 29th December 2013 and was diagnosed with MEN2B in october 2017, but has struggled with the symptoms all her life. I am a single parent but I am not alone, I am so blessed to have such a wonderfully supportive family and friends who have been by our side.

At 6 months my daughter started to get urinary tract infections, she didn’t respond to oral antibiotics as her infections were always ESBL ECOLI. When I mentioned to the doctor at 1 years old that she didn’t open her bowels for 5 days, I was told it was fine and that it was normal.  The days between a dirty nappy got longer and longer, from 5 days to 7 and then 11 days. UTIs were occurring regularly and trying to capture wee samples from a baby was so stressful.

Going into hospital also became a regular thing and it wasn’t long before my daughter would realise where we were going in the car and she would cry and beg for me not to take her. We would spend weeks on end on the children’s ward at Whipps Cross Hospital in East London. Nimrit was on 8 sachets of Movicol and other liquid syrup medication too and getting that into a 2 year old was not easy, so she had an NG tube fitted.

The amount of medication would often make her feel sick and the NG would often end up coming out, which only meant one thing, another visit to the hospital to be held down for the tube to be inserted again. It was a never ending cycle of UTIs, cannulation, hospital, antibiotics, medication, NG coming out, back in hospital….

Things then got much worse when I had to take her in for manual clean outs, under anesthesia. I think this was one of the hardest times for me, seeing my daughter laying motionless, not reaching for my face to touch for comfort or calling my name. After numerous clean outs they took a biopsy and they also fitted a permanent peg in her stomach. I was told the results of the biopsy were clear. Then 2 months later I took her to A&E because it had been 16 days since she had opened her bowels, which is when they looked at the biopsy results again and was told it was abnormal and showed Neuronal intestinal dysplasia (NID).

She was going to have an ileostomy bag fitted after her consultant returned from a European conference. He happened to discuss her case with a professor and he advised that as her results showed NID, they should test her for a few other things. She had the tests that were suggested and 8 weeks later in early September 2017 she was diagnosed with Men2B. She had her thyroidectomy at GOSH on the 6th Nov and is now back and forth to the hospital checking the calcitonin levels.

She has never had tears since birth and I thought this was unrelated.  She had 2 surgeries to unblock her tear ducts which were unsuccessful. The next surgery would be to break a bone in her nose and do a complex surgery, which would have left a scar on her face; with all the other problems she was having with being constipated, I decided against the surgery, and I am glad I was guided this way, because it turned out this was not unrealated, but a symptom MEN2B. Nimrit also has unrelated Talipes (Club Foot).

With all that has happened to her, she is very traumatised but still going strong.  My daughter is very aware of everything and earwigs into every conversation I might be having about her to someone. So now every time my phone rings, she says, ‘Mum who is it??? What they say??’. I know at the back of her head she wonders whether it’s the doctor calling.

From a very young age she started understanding things, my phone would ring and I would be told that based on her urine sample, she has a UTI and that she would have to go on IV antibiotics, so that meant a trip to the hospital, I would have to lie to get her out of the house. The worst thing was that I knew Nimrit was very hard to cannulate and that would mean she would be poked many times with a needle.  It would break my heart have to be the one helping the doctors to hold her.

Her consultant, the play specialists and surgeons are all great and very supportive and I find comfort in their continued support. When Nimrit plays alone she talks a lot about what she has heard, big words like my doll is constipated and had a biopsy, hearing her say this is very upsetting.

She is very cautious around people, even close family members, it has taken years for her to get close with my siblings, even then she very rarely leaves my side but over time has become comfortable with family now but at times Nimrits anxiety can be bad. Nimrit has good days and bad days. We take each day as it comes.

Update Friday 3rd April 2026

We are very greatful for all the post you send us, really makes a difference and brings a smile to Nimrits face… Especially with our journey getting tougher then it has ever been, so seeing Nimrit smile is touching. Her pain isn’t good and she is currently on lots of pain relief… Each day is a different day. Your prayers are much needed and will be appreciated.

Update 5th November 2024

Thanks for the amazing work you all do and for the wonderful post, from everyone, that we receive.

Nimrit has been having on going trouble with her Hickman line and so we are waiting again to see if we can increase the chemo dose. Her constipation is bad again and this causes much pain for her. She is on strong pain killers and her mood is all over the place because of this

Nimrit’s interests include pampering, Roblox, Descendants, Wednesday, zombies, Disney, slime. She also loves clothes and fashion and wears age 11-12 size. Her favorite shops are Next, River Island and Primark. 

Update 30th December 2023

To my Post Pals family… Firstly, apologies for the lateness in thanking you all for being here throughout, sending love, cards and gifts throughout the year and for the Diwali, Halloween, Christmas and Nimrit’s birthday post. We have had a rough journey this year and it has got harder. It will always be hard and heart breaking but having your prayers and blessings helps immensely. 

Thank you from the bottom of my heart. 

Update 25th March 2022

It’s been a difficult year in and out of hospital which is still ongoing unfortunately. Thanks to Post Pals, its kept Nimrit going, as she loves opening all her post which brings her happiness with lots of smiles. She loves it when young children also write to her and also loves all her gifts that are sent to her. Nimrit has also enjoyed her Costa giftcards from Post Pals as she loves a Costa Treat.

Update 26th March 2021

Nimrit has another mass in mouth that we are waiting on surgeons to arrange a date on moving. She will have to stop treatment before it’s done as it causes more bleeding and longer healing time.  Nimrit is also having sudden headaches and sweats so we have had some tests done to check her adrenal glands. She is also still feeling very tired all the time. Please could we remove that she like arts and crafts as she has a lot of craft stuff at the moment please. We would like to thank everyone who has posted to Nimrit and made her smile.

Update 2nd September 2020

Nimrit is having a pre opp assessment on 4th sept and me and her will need to get our covid test done. I know she will hate it as she hates swabs being done, so I am dreading it. All being well on the 7th she will have 2 surgeries done, her masses (tumors) removed from mouth and her throat procedure and airways checked. It’s all come at once but on the 17th we will meet her oncologist to discuss treatment and find out more about it. Nimrit has told her siblings (cousins who mean the world to her) about PostPals. Unfortunately she won’t be going back to school due to the surgeries.Please keep her in your prayers God bless and thanks so much to you all.

Please don’t send confetti/glitter, cuddly toys or sweets 

Story written 2017

Tayen was diagnosed at 22 months old after a prolonged seizure at home. She has bilateral optic pathway gliomas (tumours) that have spread through her brain to the back. She started chemo straight away and although it saved her life she lost all her vision just six weeks into treatment. First line chemo lasted 18 months and we then enjoyed 18 months off, however it was plagued with lots of seizure activity and the discovery of hydrocephalus last September. Tayen rapidly went downhill and had bilateral shunts inserted in October. Tayen also had new tumour growth which meant she needed to have more chemo.

Update 30th October 2025

Tayen continues to globally decline but that doesn’t stop her smiling! She has many tests and procedures outstanding.

Update 11th October 2024

Update 3rd February 2024

Tayen likes art supplies to make pictures, especially foam sticky shapes, but NO glitter or confetti please. Clothes (woman’s medium) and pyjamas! Tayen likes chocolate (not sweets please). Loves her Yoto audio player and listening to music. Tayen loves baking, swimming and water play. Anything pink, and jokes! No cuddly toys also please.

Tayen continues to slowly decline. Her memory is very poor since her last seizure. We are looking forward to a trip to Disneyland this year as a whole family.

Update 31st March 2022

Tayen has had a tricky start to the year suffering numerous infections, Covid and further decline caused by her brain tumours.

Update 29th October 2021

New tumour found in June 2021, biopsy in July and major surgery in September. Unfortunately they couldn’t get it all out so it’ll likely regrow. The original extensive tumour remains stable for now.

She’s declined but holding steady at the moment. She’s still unstable on her feet and unable to read Braille anymore.

Update 30th June 2021

The MRI results are in and have been discussed at Bristol Children’s Hospital in their MDT meeting. Tayen has a brand new tumour. It’s already been a very long week and we have many, many questions that need answering but Tayen needs some tests done first before we can formulate a plan and move forward. The new invader wasn’t seen on Tayen’s last scan in April but it’s already around 1cm in size and very clearly visible now. This may not seem large but with Boris ( the original tumour ) already being extensive throughout her brain, this is not good news. Her team have requested an urgent biopsy so they can determine what it is and how it can be treated. An urgent referral has also gone out to get a sleep induced EEG done as there’s a chance Tayen may be having silent seizures when she sleeps. As I’ve said, we have many questions and having to take a step back to get the results necessary to move forward is very difficult. It’s going to be a tough few weeks for our family and given Tayen’s already existing complexities, we are going to have to pull out all of the stops to make this manageable for her. One step at a time.

Update 14th June 2021

Tayen seems to be declining again with no answers as to why.

Update 12th February 2021

Tay’s health has declined. We are waiting for her next MRI to determine next steps. She’s awaiting assessments for Autism.

Update 20th August 2020

Tayen is currently on a chemo break but she will need more. Life is difficult as Tayen struggles to cope with severe pain and routine changes. It can be very difficult to occupy her. At the moment we’re uncertain if she’ll be returning to school. She currently has lots of appointments due to her varying, complex needs.

Update 9th February 2019

Tayen spent a week in hospital undergoing lots of tests. She has damage from all the chemo she’s had. Things are tough.

Update 1st November 2018

Tayen is currently finding things really difficult.

Update 19th July 2018

Tayen is now receiving hormone injections. She has Hypothalamic Damage which is also causing a lot of problems

Update 26th February 2018

Tayen is as complicated as ever. She suffered very severe bouts of body pain that require Oramorph and also her seizures aren’t great. Her mobility is also poor now and she spends a lot of time in her wheelchairs buggy when we are out and about.

**Please do NOT send Ryoo stickers as she has a phobia of stickers (Pittakionaphobia). This includes stickers on envelopes. If possible could the writing be larger and clear to enable Ryoo to be able to read it herself. Please also don’t send food or drink.

Story written 2017

Ryoo was like all other seven year old children, then everything changed …

In January 2012 Ryoo was taken by ambulance from our local A&E to the Freeman Hospital. Ryoo was diagnosed with end stage heart failure. No one knew why.

No one can imagine what it’s like to watch your child’s life slipping away. Every day her body was pumped with more and more medicines, she became thinner and thinner. But she never stopped smiling, she never gave in. She would play with the play specialist, the clown doctors and make bracelets.

I wanted to scream and shout “this isn’t fair, why my child?”, but when I saw Ryoo determined to keep going I decided to fight with her.

Sadly Ryoo’s body wasn’t responding to the medication and less than a month after diagnosis all that was left was to place Ryoo on the organ donor register and hope that a heart would be come available in time. Ryoo took this in her stride like she does with everything else.

Ryoo was becoming weaker and weaker and eight days after being listed, it was decided that Ryoo’s body needed a rest and she was to be placed into an induced sleep (life support).

When we told Ryoo what was going to happen she just smiled, the smile that had kept us all going.  I looked into my daughter’s blue eyes and wondered if I would ever see them again. The next time I saw Ryoo  she was in PICU and ventilated. I held her hand and read story after story to her. On 10th  February I was sitting reading to Ryoo when the call came that Ryoo was going to receive her gift of a new heart. I couldn’t believe it. She had fought and fought so hard. Here was her gift, a new heart. A chance to continue to live her life.

I saw Ryoo the next day, she was covered in wires but she was awake and I could see those blue eyes. Ryoo made excellent progress and within three to four days she was out of PICU and back on the ward. She continued to get stronger and stronger and was home after three weeks.

Life was not to be the same for Ryoo, life has changed but Ryoo embraced these changes.

Ryoo lives with a life limiting condition. A life that at anytime could be taken away due to infection or rejection. Ryoo will take immunosuppressants for the rest of her life. But this doesn’t stop or hold her back.

Ryoo’s health has been a constant battle.

With many diagnoses –

2012 – Heart transplant.

2013 – Raynaud’s Phenomenon, a condition that restricts the blood flow to the hands and feet making them cold and white and painful.

2013 – Hypermobility syndrome with bilateral flat foot, causing constant pains to her knees legs and feet. When the pain is unbearable she uses a wheelchair.

2013 – Low immunity to infection requiring a weekly subcut infusion of a blood product immunoglobulin into her legs.

2014 – Stomach and head migraines lasting days to weeks.

2014 – Autism spectrum.

2016 – 14 weeks of diarrhoea causing weight loss and fatigue.

2016 – Blocked femoral artery causing pain to her leg and three months of daily injections.

2017 – Followed by a diagnosis of Chronic Fatigue Syndrome – ME.

On top of this Rachel has to attend eight-weekly transplant clinic, blood, ECG, echo etc. Appointments with all the different consultants she sees. Tests after tests. Numerous hospital admissions and appointments.

Update 12th April 2026

Ryoo has been in hospital for a while now due to a big clot sitting near her heart. She’s requiring extra dialysis sessions and she is struggling.

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 30th June 2024

Ryoo been back in hospital for nearly 3 weeks now and she’s very down. Sadly she’s been in hospital more this year than at home.  Her kidney function keeps dropping despite different plans. She now has a portacath, PEG and PEGJ and is on 24-hour TPN. Her mood is very low. Her service dog Loki is able to be in hospital with her.

Update 18th March 2024

Since Ryoos last update her health has been not the best and she has spent more time in hospital than at home, including a long stay in Critical Care on life support.
Ryoo is now TPN fed for 22 hours a day with only a two hour break and all her medication goes through her PEGJ.  Ryoo is only allowed to drink 300mls a day which as you can imagine is very difficult.
All of this is along side all the medical conditions she already has. Life is hard and very challenging. All the teams involved are trying to keep Ryoo as well as they can.
Ryoo has a number of procedures planned over the next few months as long as she remains stable.

What has really helped Ryoo deal with all the hard/challenging times is receiving, cards, letters and gift from all the PostPals. This has made Ryoo feel special and distract her from what is happening to her.
Thank you to everyone that has taken to the to write and send gifts. You are all amazing.
Ryoo loved all the games, Lego, switch games, Jellycats and Japanese stationary.

Thank you for thinking of Ryoo and making her feel special. Xxx

Update 27th June 2022

The last three month we spent in three different hospitals with Rachel have shown me how amazing my daughter is. The fight to live.

On the 20th March Rachel suffered a cardiac arrest at home and was unresponsive for 8 minutes.
Luckily the paramedics where at the scene when it happened and they managed to ventilate and sedate Rachel and blue light her to Critical Care.

Over the next three months Rachel spent 90% of her admission in ICU at the RVI and Freeman Hospital.
Rachel started to have issues with her kidneys, lungs and heart.

Rachel had five mayor episodes during her admission where her kidneys, lungs and heart couldn’t cope and she required CPAC and constant dialysis. Rachels lungs suddenly would fill up with fluid as if she was drowning inside. No one understands how or why this happened as all of her blood results were perfect. During two of these episodes Rachel was that poorly she was due to be ventilated and sedated but luckly she kept fighting back and managed to remain on CPAC.

After 10 weeks in ICU Rachel eventually managed to move to the ward and stay there (the other times Rachel had been to the ward she had bounced straight back to ICU). During the weeks in ICU Rachel had over 8 blood transfusion, 10 weeks of dialysis, loads of IVs, CTs, MRI, lines fitted and four Vascath fitted and then a more permanent tunnelled Vascath as Rachel has no vein access.

It was a further three and a half weeks on the ward before it was felt Rachel was stable enough to go home. HOME a word we didn’t know we would ever hear.

Being home is strange and at first hard as we had lost the security of the doctors and nurses being around and ICU just upstairs. But we’ve soon adapted into a new normal routine. Rachel is now on a fluid restriction and calorie restriction. She has to be weighed every day, have her temperature and stats taken at least four times a day. We have to be constantly on the look out for any fluid build up and breathlessness.

No one knows if Rachel will have any further episodes but all we can do is live for the now and follow the strict guidelines from the teams involved.

Rachel attends clinic weekly to have her bloods taken and her Vascath flushed and dressing changed.

Life feels different and strange now, but hopefully with time everything will settle down.

Thank you soooo much to everyone that has sent post to Rachel. She has loved me reading them all to her.  She especially loved all the Jellycats as she collects them.

You’re all amazing people making time for others. I can’t thank you enough. During our darkest time you gave us normality.

Update 30th October 2021

The last few months  have not been kind to Rachel.  The impact all her medical conditions are having on her body and mental health is sad to see.  Shes very down and struggling to see the point which is heartbreaking. 

Thank you for all the post that has been sent to Rachel. As aways it greatly received.  Sorry that I haven’t thanked everyone individually. 

Update 14th June 2021

Since Rachel last update the complexity of Rachels medical needs has increased. 

A MRI to her stomach showed Atrophic Pancreas (diseased) which is likely to be due to her Rare Genetic Disease. 

A MRI to her head showed a buildup of pressures which needs investigating. 

A CT to the stomach showed a blood clot between her heart and stomach. She has been put on a daily injections and is due to see the Hematology Team. 

Rachel had been referred to the epilepsy team as it appears she’s having some type of seizures. 

Rachels pain relief has been increased and she is now on Morphine Sulfate alongs side the other pain medication. 

Her vision continues to get worse and shes been registered Visually Impaired. 

An appointment with Addenbrooks confirmed the diagnosis FamilialPartial Lipodystrophy Type 2, Dunnigan Variety due to Rachels Rare Genetic Disease. 

Rachels living with constant widespread chronic pain and constant Nausea. She has days when she can’t bring herself to eat and on the other days she is eating to due to being hungry rather than enjoyment. (Shes even stopped eating her chocolate buttons which she loves)

Rachel has had a number of admissions to hospital through A&E due to the impact everthing is having on her body. 

We are waiting to see the impact all the new issues and diagnoses have a Rachels body and mental heath. 

A MDT meeting is being arranged to look at how to manage Rachels complex medical needs and give her the best quality of life. The Palliative Care Team and Chips are to be involved. 

It has been a hard, stressful and emotional filled month with worry and lots of tears. 

To not be able to wave a magic wand and make it all better is so hard as a parent. To see your child progressively get worse. 

Rachel had tried to remain positive but its been to much for her and shes had some very dark days. 

Thank you to everyone that has thought of Rachel and sent letters and cards as always it means so much. Xx

Update 26th March 2021

We’ve had a terrible week.

The eye consultant on monday registered Rachel as Visually impaired. She need a Head MRI done asap and then a MDT meeting to look at how best to support her.

Then the gastro team called to say they want a stomach MRI and a endoscopy top and botttom. As she had nausea for over three months constantly.

The diabetic team increased her insulin and said her kidneys are releasing protein into her unrin so she needs to see the kidney team sooner rather than later.

The pain team are waiting a joint meeting to discuss Rachels pains and how to support her better.

And to top it off we went for Rachels 6 weekly bloods and she won’t bleed at all and was so upset. It couldn’t have come at a worse time as loads of her consultants had asked for extra bloods to be done.

My heads all over more and more teams involved and I forget who knows what and what everyone is doing. My heart breaks for Rachel as it does seem unfair to have as many medical conditions and life limiting conditions.

Tomorrow is another day so lets look forward to that.

Update 30th March 2022

Rachel is still in ICU very unwell.

Update 21st March 2022

Rachel was on weekend leave from hospital when she became unwell at home. Paramedics were called and whilst they were with her she went into full cardiac arrest. It took 8 minutes of CPR for them to revive Rachel, they intubated her and transferred her to ITU.

Update 6th February 2021

Rachel had a quiet birthday and it took her a week to open all her cards and gifts (with help) Thank you to everyone that sent cards and gifts Rachel loved them all. Rachels health isn’t good and she waiting for a MRI on her Head, a MRI on her Stomach and a Endoscopy.  She has been Registered as Visually Impaired and needs a MDT meeting to discuss how best to support her. 

Her Insulin has been increased again as she becomes more more insulin resistant. Rachels had a Constant headache for 3 months and nausea for 4 months alongside the widespread chronic pain is getting her down. The Pain team and gastro are looking into this. Shielding continues. 

Thank you for thinking of Rachel

it means a great deal. 

Update 6th February 2021

The complexity of Rachels medical conditions has become increasingly harder for her to handle physically and mentally. The constant widespread chronic pain, fatigue, bed bound and generally feeling yuk all the time is depressing and hard for her to deal with. 

Having to deal with the impact of so many medical conditions and the impact each one has on her body. 

She is waiting for a referral to Addenbrooks for her Lipodystrophy. There are only 500 people world wide with Rachels type of rare disease and sadly there isn’t much information around to suport her, all the teams involved are learning as they go along. We are blessed to have so many dedicated doctors, consultants and nursers etc looking after her, who call regularly and check to see how we all are. 

A referal has also been made to the Kidney Team due to Swelling and concerns from teams involved that the fat within Rachels body can cause problems for her organs. 

On a positive note we are greatful for another year with Rachel as we celebrate in February her 9th heart transplant day and her 17th birthday.  

Thank you for all the post and gift

Rachel has received over the last few months. We really appreciated the smiles the post gives to Rachel. Especially the chocolate as she will occasionally share yummy. 

Sorry that we’ve not had an opportunity to thank everyone personally. 

Update 20th August 2020

Life is a massive struggle for Rachel, as she continues to be bed-bound. Suffering constantly with chronic wide spread pain, fatigue, headaches and nausea. 

The complexity and uncertainty of Rachel’s medical needs are impacting her life daily and leaving her physically exhausted and in a low mood. 

Rachel has just been diagnosed with Partial Lipodystrophy which is due to the mutation in her LMNA gene. This has come as a complete shock and sadly another medical condition to add to the already long list. 

The worrying impact this condition will have on Rachel physically and on her mental health. Sadly there is no cure. 

The Partial Lipodystrophy is what has made Rachel diabetic and resistant to insulin. More injections and more medication. 

We are still waiting for further tests to be carried out from the Allergy and Immunology team. Due to the ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. The teams are also looking into her genetics Laminopathy. 

Rachel’s CFS/ME and constant widespread pain has left her feeling constantly fatigued and no amount of sleep is refreshing her. Her concentration is none existent.

Rachel has had a lot of hospital admission over the last few months. Due to COVID-19 and Rachel being extremely vulnerable all of her normal hospital appointments wherever possible have been over the telephone. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable.  As advised by her consultants we continue to shield Rachel and try and keep her safe. 

Rachel is  very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her. 

Update 7th June 2020

The last few months haven’t been good to Rachel.  Rachel is bed-bound and in constant chronic wide spread pain and an increase in pain medication hasn’t made any difference.  The complexity of Rachel’s medical needs is impacting her life daily. 

Rachel is due to have further test and bloods carried out by the allergy and immunology team due to ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. They are also looking into her genetics, DNA and her Laminopathy. 

The diabetic team are constantly increasing the amount of insulin Rachel takes as her blood glucose levels are constantly high. (Rachel now takes more insulin than any adult or child the team see) Rachel is having to inject insulin every two hours, which isn’t nice. If Rachel’s blood glucose levels don’t improve by the end of July she will be admitted to hospital to be monitor and tests carried out.  Rachel’s CFS/ME has left her feeling fatigued, her concentration none existent. No amount of sleep is refreshing her. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable. It has left Rachel feeling even more isolated then she already did.  Rachel is very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her.  Rachel would have been finishing her last year at high school but due to her multiple medical and health needs Rachel hasn’t attended school for nearly 4 years.  No GCSEs and no prom. 

We have made the decision to pause Rachel’s schooling at 16 years old and focus on her health needs and enjoy the moments. We would like to thank everyone at PostPals that has sent Rachel post and the two wonderful Mini Mouses she has received. 

You have all brought smiles to Rachel’s face which is priceless. 

Update 27th November 2019

Life continues to be a struggle for Rachel, having to deal with the challenges that so many medical conditions brings and with that uncertainties for her future.

She has spent most of November feeling yuk: fatigued and in bed, resting, sleeping and lying down. Trying constantly to distract herself from the widespread pains. She’s sick of being diabetic now and hates having to inject the insulin and have her blood glucose checked so often.  Too many hospital appointments and meeting.

Loki her puppy continues to bring her love, happiness and a much needed companion.

Rachel continue to love receiving post from PostPals. It brings her happiness and makes her aware of the world and how thoughtful people are.

Thank you from the bottom of my heart for sending post to Rachel and making her feel special.

Update 1st September 2019

Rachel’s had a rubbish summer backwards and forward to the hospital. 

Rachel has been diagnosed as insulin dependent Diabetic. At the moment she has to administer insulin subcutaneous at least four times a day and do her bloods eight or more times a day. More medication to add to the collection. Rachel is at the hospital every week till her glucose levels stabilise. She also has the diabetic nurse and dietitian coming out regularly to check on her. 

This diagnosis has come as a shock and as a family we are still trying to get our heads around it. 

Her CFS/ME hasn’t been the best and Rachel’s still having days when she can’t walk or move parts of her body. She’s tired all time, feels rotten and looks very pale with  headaches most days. 

Rachel is very down at the moment as it will be another school year that she doesn’t attend, and this would be her GCSE school year with Prom.  It’s over three years since she last went to school. 

On a positive note Rachel’s puppy Loki has settled in and Rachel adores him. They spend as much time together as possible, snuggling on Rachel’s bed. 

Rachel has loved all the post and gifts she has received from the Post Pals. It makes her feel part of the outside world. It makes her feel valued and that people care about her. 

Thank you from the bottom of our heart to everyone that has sent Rachel cards, letters, postcards and gifts. You have all made her smile and that is priceless. Thank you xx

Update 20th June 2019

Life has been a struggle for Rachel since her last Post Pal update. Her complex medical needs have continued to impact her daily life and cause problems with her health. Rachel has had days when she physically can’t walk, stand or move her arms. Alongside this she’s has constant chronic widespread pain. She’s had a constant headache for over 30 days and to top this off her blood sugar levels have been all over the place. (This is now being investigated.) The teams involved feel these added health issues are part of her ME/CFS. 

Since Rachel’s last update she’s been diagnosed as being moderately visually impaired as she has constant double, blurred vision with black silhouettes. Rachel continues to have issues with breathlessness due to her lung function being between 35/50%. This causes Rachel stress as she panics when she becomes breathless. We have reached three years since Rachel last went to school. Since January she’s only managed a few hours of school home tutoring. It’s hard this time of year as children are getting their school reports and next year’s teachers. Rachel would have been going into her last year of high school and taking her GCSEs and having prom. Sadly none of which is going to be possible.

Far too many hospital appointments and hospital admissions, planned and unplanned, to manage the complexity of Rachel’s health and medical conditions. 

On a positive note we got Rachel a little puppy dog called Loki. Rachel adores him and he gives her purpose. 

We can’t thank you all for the lovely letters and cards Rachel has received.  You are all wonderful, caring people. Thank you for the smiles you have given to Rachel which are priceless. 

Update 1st March 2019

2019 has been a busy year so far for Rachel. It started with a three day admission to check Rachel’s heart and stents under GA in the cath lab. Rachel’s heart is looking fabulous, but her stents needed to be ballooned back up. Lots of test carried out. Transplant clinic continues to be every 8 weeks.
Rachel’s has had a MRI on her legs for her Muscular Dystrophy and a MRI on her head due to blurred vision, headaches and sight issues. No results back yet, but all very stressful for Rachel.  Lots of hospital appointments, MDT meeting and involvement from CNDS team.  Life is driven at the moment by Rachel’s chronic widespread pains, Muscular Dystrophy, ME and generally feeling yuk. This is all causing massive sleep issues.

We are very proud of Rachel as she has managed 30 minutes of home tutoring so far this year.

On the 10th February we celebrate Rachel’s 7th heart transplant day which is always very emotional. Happy that Rachel has made it this far and we are able to celebrate another milestone, but sad that another family has another year without their loved one.  We also celebrate Rachel’s 15th birthday. We can’t thank everyone enough for all the cards that Rachel received for her birthday. When your child doesn’t attend school they don’t tend to get many, so you all made her birthday very special.

Thank you to everyone that has sent post to Rachel. Sorry that I am unable to thank you all personally but you’re all amazing.
Seeing Rachel smile and laugh as she opens her post is priceless. Thank you

Update 2nd November 2018

Rachel’s health is still plagued by chronic diffused Pain. The Chronic Fatigue Syndrome has not been good and Rachel has been bed bound for days and days. Sleeping and resting more as she tries to take her mind off the pain.

Rachel is struggling to handle all of her complex medical needs and as a family we are trying to deal with this together.

Due to the weather change and added stress and anxiety Rachel is enduring at the moment her Raynaud’s Phenomenon is flaring up more and more.

The results from the endoscopy showed that Rachel has Centrally Mediated Abdominal Pain Syndrome, which means she is now living with a constant chronic pain to her abdomen. Rachel is seeing the Pain Team about this.

Rachel has lots of hospital appointments over the next two months up to Christmas. Hopefully some answers to why her face and stomach swells up everyday, a plan to help with the constant pains and an opportunity to catch up with the Muscular Dystrophy and transplant team.

All the consultants and specialist involved in her care are trying to support her the best they can and give her the best possible future.

On a positive note Rachel has had an assessment for a Power chair which hopefully will help give her a little independence and help ease the pains to her legs and feet.

I would like to say the biggest thank you for all the post Rachel has received since her last update. She’s been overwhelmed by it all and you’ve made her so happy, she’s loves opening it all. We read all the cards and letter together.

Thank you to everyone that sends post to Pals and spreads so much happiness around.

Update 9th September 2018

We have now hit the two year mark since Rachel last attended school and there’s no sign of her returning due to her many complex needs. Rachel is very low at the moment as her sister had left to go to uni and everyone is talking about going back to school. Too many hospital appointments to keep up with and more medication changes and more medication to be added.  Life is tough and at Rachel’s age she is more and more aware of how her body is letting her down and that there are many things she can’t do any more due to her LGMD1B. Living with a constant abdominal pain and joint and muscle pains is very tiring and causing her to feel fatigued even more. Rachel rests a lot during the day and uses her wheelchairs whenever we are out. She has two admissions due this month, at least 5 teeth out, and an endoscopy.

On a positive note, we are due to start renovating the garage into a downstairs bedroom and wet room for Rachel to give her more independence. This will hopefully help her feel more part of the family. As she can’t manage stairs very well and at the moment is isolated upstairs.

Rachel has loved all the post she has received and it’s the one part of her life that has remained normal and FUN. The gifts and cards she has received have been personal and very touching. Thank you everyone. I don’t get on Facebook very often to say thank you but we really appreciate everything you all do.

Update 20th July 2018

Life isn’t the best for Rachel, with her complex medical needs giving her ongoing health issues. At the moment she has to endure 1-3 hospital appointments most weeks, weekly physio and weekly subcut infusion. She’s also waiting for three admissions for procedures to be carried out. Rachel had her first appointment with the Genetics team after being diagnosed with a rare progressive muscular and skeleton disease – Muscular Dystrophy LGMD1B.

This appointments was extremely stressful for Rachel and a eye opener for us all. Rachel’s lung function is only 50-60% and this would explain why she gets breathless and tired. Her wrists and fingers have developed contractors and she needs supports to help ease the pain. Rachel has pains in most of her joints, but the pain is worse in her ankles, knees, shoulders, back and wrists. The muscles are weakening in her arms and legs. Rachel has been referred for hydrotherapy to help ease the pains and relax her muscles, and pain management to help control the pain she is in.

As this is a rare genetic mutation, no one can say yet how progressive it will be. They can only monitor Rachel and support her. Rachel is struggling to come to terms with the diagnosis of LGMD1B. She finds it hard to see a positive future when so many things she use to be able to do she can’t any more and she’s aware that the diagnosis is progressive.

Rachel’s chronic abdominal pain is causing her lots of distress and this really doesn’t help her Chronic Fatigue Syndrome and she can be bed bound for days. She’s due to have an endoscopy very soon so they can make a diagnosis. Rachel can have days and days when she can’t sleep due to the pain. It’s hard as the pain in her stomach never goes away.

Cardio transplant clinic continues to be every 8 weeks and Rachel is due there next month. Lots of tests to be carried out.  Alongside this, she continue to see the respiratory and immunology team. Chronic Fatigue – ME – continues to be a struggle. Rachel feels tired and fatigued but is unable to sleep due to the pain. Constantly feeling tired.  Rachel’s having weekly physio which, sadly, is a reminder to her of what she can’t physically do any more. But hopefully it will help in the long run.

It’s been two years since Rachel last attended school and at the moment there’s no plans for her to be able to return. This causes isolation and can make Rachel feel very lonely. This time of year is especially hard on her as everyone is getting a school report, going on school trips and having leavers parties. Through all the hospital appointments and ongoing health issues, with the support of Post Pals we try hard to make life as happy and fun as possible.

We managed to attend the Post Pal trip to Chessington, which was truly amazing and we made many, many happy memories.

Thank you so much for the invite.

Thank you for the ongoing support Post Pals has given to Rachel. The happiness the post gives Rachel is priceless.

We really appreciate you all and can’t thank you enough.

Thank you xxx

Update 10th March 2018

I’ve struggled with this update as it makes it all seem even more real.
I am such a positive person but life is rubbish at the moment as we are all trying to get our head around Rachel’s rare genetic diagnosis and what this means for Rachel. A recent appointment with the Genetics Professor left us with even more questions and a very upset Rachel. Lots of leaflets on Muscular Dystrophy and more appointments. Trying to remain positive. She is still living with the chronic abdominal pain.

Update 4th November 2017

Rachel has recently been diagnosed with a Rare Genetic Muscle disease: Lamin A.C gene – Laminopathy  De Novo Lamin Mutation LMNA c.868G>A (p.GLU390Lys) Skeletal muscle disease. Muscle weakness and contractures. There’s no cure for this condition. Rachel will need to have long term physio and hydrotherapy to help reduce the muscle and joint pains. We are waiting to see how this will effect Rachel short term and long term.

This would explain why Rachel can’t do certain physical tasks she used to and how her wrists and fingers have formed and can’t be moved as much. She struggles to write. She’s been having terrible trouble with her wrists, legs and back. Genetics want to keep a close eye on her breathing as this is also one of the problems related to this genetic mutation. Rachel’s had the OT out and they are applying for a stair lift and to change our main bathroom to make life better for Rachel.

Rachel’s also having a terrible time with stomach pains which aren’t relived with any pain relief. She’s endured a few trips to A&E and 5 days admission into hospital.  No answers yet, had CT scan of her stomach and lots of bloods taken. This is all getting Rachel down. We are desperately waiting for a plan and a way forward. Rachel’s been referred to pain management.

ME – Chronic Fatigue continues to be a struggle, with Rachel feeling tired and fatigued but unable to sleep due to the pain. She’s spending all her time lying around in her bed staring at cartoons and constantly feeling tired. Rachel had an overnight admission to hospital for her Cardio transplant. Rachel is waiting for CT of heart and blood results. Rachel continues to attend transplant clinic every 8 weeks to make sure her heart is ok.

Rachel’s list of consultants and medical conditions is getting longer: Vascular, rheumatology, Cardio, neurology, Dental, Gastro, physio, hydrotherapy and Genetics to name a few. At the moment it’s all getting too much for Rachel – she’s feeling that she’s never going to get back to school and be pain free. She’s struggling, as she has that many consultants and specialist involved in her care that at times it can be overwhelming and hard to manage especially as she’s autistic.

Thank you to everyone that supports Post Pals and sends Happy Post. The post Rachel receives gives her an opportunity to forget about her complex medical needs and feel very special. Rachel loves opening the post and gets me to read them to her (Rachel’s concentration isn’t the best). Thank you from the bottom of my heart, for all the smiles you have given to Rachel. Rachel now hasn’t been to school for over 16 months due to complex medical needs and she can feel very isolated as she has little contact outside the house. Please keep spreading the smiles around, you guys do an amazing job.

Rachel sends a huge hug. X

Update 1st October 2017

Rachel’s health continues to be an issue with a number of hospital admissions arranged. At the moment the biggest problem is gastro with Rachel having a constant distended stomach and pains which are causing her to have no sleep and feel generally rotten. More changes to medication and more medication added to try and resolve this ongoing problem.

Rachel’s chronic fatigue (ME) is causing lots of pains in her joints and leaving her feeling very isolated and lonely as she hasn’t attended school for 14 months now. Rachel spends most of her time in bed watching DVDs. This gets her down a lot.

Rachel’s had a few bad stomach and head migraines recently so her neurologist is looking at her medication to see if anything needs changed.  Rachel’s heart transplant means she attends clinic every six to eight weeks.  Rachel’s yearly admission is due next month. We are waiting for further cardio genetics tests to be done and a referral to a muscular genetics consultant.

Rachel has lots of hospital appointments due and her dad thinks we should get a PA to make sure we don’t miss any (lol). Having so many different medical conditions can be very hard on Rachel, at times as she feels like she never gets a break from it all. Even her consultants refer to her as the complex needs child.

We can’t thank everyone enough who sends Rachel post. The smile we see on her face when the post arrives is priceless. It gives her a chance to forget about her pains and have FUN opening them. You ALL make her feel so very special and wanted. Thank you. Rachel sends a BIG thank you too x

We all really appreciate everything Post Pals does. It’s hard seeing your child go through so much and not be able to make a difference but seeing Rachel so happy receiving post is wonderful to see.

Update 5th June 2017

Rachel is still off school and has been since last year, emotional upset and her concentration is very poor. She’s due to start FOBMAP diet due to her Gastro issues so she can’t have any chocolate and most sweets. (No wheat, dairy, gluten and loads of other things), Rachel is very distressed about this as she loves chocolate.

Rachel’s been getting more pains in her feet, legs and knees. Her consultant feels it’s due to Rachel not being active due to her ME-CFS and she now has daily physio to do in bed. Hopefully she’s going to get a new wheelchair this week.

Rachel’s been struggling with her weekly subcut infusion (realisation that it’s for life) and the pain it causes hopefully this will settle down otherwise it’s back to having it done in Hospital.

Rachel still attends cardio transplant clinic every 6-8 weeks for all the regular tests.

Rachel and I would like to say a BIG thank you for all the welcome cards and goodies that have been sent. You have all put a BIG smile on Rachel’s face. I’ve not seen her this happy in a long time. Sorry that Rachel’s not up to writing replies but she loves me reading them all to her and helps me reply on Facebook.

Thank you from the bottom of my heart x

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 21st August 2017

Rachel continues to struggle with her ME and she has days when she physically can’t get out of bed and relies on her daily painkillers to enable her to move. Rachel is seeing more and more specialists to help with her ME, Hyper Mobility Syndrome and joint pains.
Rachels is also having more Genetics tests done due to her heart transplant and finding a problem with one of her genetic genes. Gastro issues continue with daily bloating of the stomach and more referrals and tests to find out why. Loads and loads of hospital appointments.

Thank you to everyone that supports Post Pals. You ALL really do spread smiles around. Your post gives Rachel a chance to forget about her complex medical needs and have FUN opening them and she loves waiting for the post to arrive. (I read them as Rachels concentration isn’t the best.) You ALL make her feels very special and wanted. Which when your child hasn’t been to school for over a year and doesn’t have any friends is so important. You have ALL given her so many smiles. 😊 Thank you from the bottom of my heart xx
Rachel sends a BIG thank you too xx

Please  don’t send glitter, shark or feathery things as they may damage her eyes or skin. 

Please only send Halal or vegetarian food items to this family

Story written 2015

Rida was born with RDEB (recessive dystrophic epidermolysis bullosa). This is a rare and painful skin condition in which the ‘glue’ that holds the skin together is missing. So any minor trauma or friction causes her skin to shear or a wound to occur. This is the same with eyes, ears etc. Rida is on overnight feeds as she cannot drink due to the dangers of aspirating caused by the EB. At birth she had no skin on her right leg, left heel, both elbows and a patch on her tummy. It’s all healed but her right leg is still extremely sensitive. Rida takes it all in her stride. She never lets anything stop her even though she’s in constant pain. EB affects the eyes the same way, it also causes blisters which we have to burst and dress. These can occur for no reason and do so on a daily basis. She often gets them in her throat causing her to vomit blood.

In January 2015 Rida is supposed to be having major hand surgery. This can take up to six weeks as she will have to go back to GOSH weekly for three weeks to have her dressings changed under general anaesthetic. Her fingers are fused together and they are operating to open the gap back using skin grafts from her back or thigh.

Rida has never ever complained and is always happy and smiling. She is an inspiration to everyone who knows her.

Rida’s sister is called Amina and is also a Pal with her own page.

Update 11th July 2026

As time goes on, Rida’s skin has been getting worse, and her wounds are taking longer to heal. Her upper arms have been sore for almost four years straight. She’s now also on permanent iron infusions four times a year and has blood transfusions when necessary. This may not sound like a lot, but when it takes ages to get a cannula in, it’s really hard for her. If she finds out she has an appointment for one of these, she starts stressing days in advance.

She’s really struggled in the summer. Having dressings on 95% of her body, along with clothes, makes her so hot and itchy, which causes even more damage to her skin.

As ever though, she gets through everything with a smile, although the smile is wavering now. We’ve always been told her future is bleak, so we take each day as it comes.

As ever, thank you for all the post, help and advice. A special shout out to Carol, Beverly, Bev, Anna and Sarah, and a massive thank you to Vikki and everyone at Post Pals.

Update 31st October 2025

Rida’s EB has progressed as the doctors predicted. She now has dressings on 90% of her body, but as you can see from her profile picture, that smile is always there! She’s the bravest child ever.

Unfortunately, she didn’t get a place at college and we are struggling to find somewhere suitable. She is currently at home, resting most of the time due to the extensive wounds. We have been warned that once EB patients reach the age of 16, the chances of developing skin cancer increase, so that’s another worry. She’s plodding along, showing her bravery to the world.

Rida loves girly things, nothing too sticky. She can’t wear jewellery, but she loves lip gloss, perfume, fluffy socks and soft things in general, such as fluffy hairbands or bobbles. She also likes make-up but is still deciding what kinds she prefers.

She’s pretty easy to please.

Update 8th November 2024

Update 28 February 2024

Rida has had a settled 2023. This has included many appointments but no stays. Her skin continues to be as fragile as a butterfly’s wing. She has various body wounds now and approximately 90% of her body is covered in dressings. This is ok in winter but in summer it can be very uncomfortable due to heat.

She’s got more tests and things coming up in 2024, but as ever takes it all with a pinch of salt. She’s the smiliest and happiest child I have ever met, considering the amount of pain she’s constantly in.

As a family we’ve been through many ups and downs and Amina’s health has suffered a lot as well.

Her favourite colours are pink and blue. She’s really into shiny lip gloss and other make up. She loves all things soft and fluffy as they don’t damage her skin. She isn’t a big eater and anything she does eat must be suitable for vegetarians.

As ever thank you to all of you wonderful people for your amazing support.

Update 7th September 2022

So much has happened since the last update. Rida finally managed to have the hand surgery that was cancelled. It was 5 hours long. They opened her fingers and had to make a cut in her forearm to straighten the veins. She had to go back to theatre for weeks in a row weekly to have it redressed as it wasn’t doable while she was awake. The entire summer holidays were spent in and out of hospital. Now we are doing them at home and she still cries and screams as it’s so painful. Overall, she is still as happy and cheery as ever. I don’t understand how she does it. She’s amazing.

Lastly thank you so much for your post. Your letters, cards and gifts, everything. It makes such a difference to her day. Thank you.

Update 25th March 2022

In April Rida’ Mum became very unwell and spent most of the next year in hospital, she was in a coma for months and had a transplant but is now home.

Rida is doing well but providing her swabs are clear she has major surgery on the 29th of March. She won’t be able to use her right hand for about 5 weeks but hopefully once recovered she will be able to use her hands more than she currently can.

I would like to say thank you to everyone for their love and support while I was unwell too. A big thank you to Maureen and Wendy.

Update 26th March 2021

Ridas fingers have curved even more and she cannot straighten them. She’s awaiting surgery but it’s classed as non emergency so we have no idea when it will be done. As summer and warm weather approaches here itching increases resulting in increased damage.

Update 6th February 2021

Ridas skin is very very bad at the moment. Predominantly her waist and she’s in a lot of pain. To top that off she needs more throat surgery and her gastrostomy also

Update 20th August 2020

Rida has just had her 6th bout of throat surgery. At the moment she is really struggling with pain, but trooping on with a smile. She never ceases to amaze us.

She is due to start secondary school in September so all the relevant training is being put in place. She will be using her wheelchair in school which is a big step and a new thing for her but her legs are weaker. Her bones are very weak and she has to now have bone strengthening IV every 6 months. She had 2 fractures in her back which went unnoticed and healed incorrectly and now cause pain randomly.

She is on the list for major hand surgery and is still tube fed overnight. She still aspirated and isn’t allowed to physically drink anything.

Update 4th December 2019

November sees the start of many appointments for Rida. Almost every other day. Her neck is very very sore and raw and no matter what we do her hair is stuck in the mornings causing immense pain when it’s pulled out. She’s due surgery for her hands maybe around January. Both legs each have a very deep wound. A huge one which is requiring regular morphine yet despite this she is always smiling and laughing.

Amina is coughing again and the weather isn’t helping. She’s on extra medication to clear the cough.  She has an AA coming up which takes up the entire day. She’s got exams at school too, she’s taking everything in her stride. We are very proud of them both.

Huge thank you to everyone for all the post. Rebecca Butler, Quangle Wangle,Geraldine, Carol Hart, Beverley Ann Rudd, Jenny , any families and the many I’ve missed too. Thank you.

Update 8th October 2019

Rida had a very rough end to August and start to September. She was hospitalised with a bad back which ended up with a 5 day stay, fractured back, bone which had healed wrong, vomiting, big spikes in temperature and possible sepsis. Her surgery was cancelled twice but 3rd time lucky and it was a success. She’s already missed so much school. This was very hard for her as she missed her friends. Now she’s back she’s hoping to catch up.

As always I’d like to thank everyone for all their post Rebecca Butler, Quangle Wangle, Carol Hart, Beverly Ann Rudd, Faye Walker, Geraldine Entwistle, Tasmin and Ellie Ewbank just to name a few. Your post and well wishes has kept us going and means more than you’ll ever know.

Update 1st September 2019

Rida is again having throat surgery and also teeth extraction. This is bad enough for a normal child but for a child with EB it is doubly painful. She is also having major surgery to her hands as one has turned the finger into like it’s gripping something and the other is fused. This is a six week extremely painful procedure and will be lot of time off school.

Update 21st March 2019

Rida is not well at all. She’s been off school for 5 weeks with wound after wound. She’s been given a wheelchair as walking is getting too strenuous. She also got food stuck in her throat which cause severe damage which then in turn caused strictures. She spends half the night gagging and spitting because she can’t swallow. She’s not physically eaten for 5-6 days and is solely relying on her overnight feed. She misses school, her friends and teachers. She’s very upset. She has been put on the list for emergency surgery and I am actually writing this from her hospital room waiting for the surgeons to call her.

As always I’d like to thank everyone for their post. I don’t want to name 1 person because I’ll forget others and that’s not right. You wonderful people all know who you are.

Geraldine Entwistle, Mark Marx, Carol Hart, Sue Russel, Faye Walker, Quangle WangleBev Higgins, Beverly Ann Rudd and just everyone so thank you

Update 1st November 2018

Amina had an admission in September. She missed the start of school. Had a broken gastrostomy which then became infected causing severe discomfort and pain. It was removed and the decision made to leave it out. She may have 1 more admission before xmas and now really struggles because she hates missing school.

Rida has had a horrendous time lately. Her wounds have been so extensive to the point where we have been unable to  bath her for weeks. It’s been extremely difficult to watch her cry in pain. To add to this she’s had unexplained back pain and chest pain which nobody can understandand has had so much time off school.

She’s struggling to walk and her team want her to start using a wheelchair to make her more comfortable. This will benefit her but will be extremely difficult for us as parents to see our 10 year old in a wheelchair.

I’d like to thank everyone single person for their post. All the letters, cards, gifts everything. The fact that you lovely people take time out of your day to put a.smile on my child’s face means more to us as parents than anyone can possibly know. Thank you.

Update 18th July 2018

Rida is really struggling in the heat. Her wounds are getting larger, more severe and painful. Bath time is horrendous and she screams the house down and now the same is happening at bedtime because her body relaxes and she feels the pain more. Dressing changes are also awful. She’s missed so much school due to pain. Rida loved the party and her favourite part was the beauty parlour.  She enjoyed the lucky dip and made some cute key rings at the craft table. It did take its toll once we got home and we had lots of tears but she had a fab day.  Thank you to everyone who worked so hard to make it happen.  We are waiting on surgery date for her hand operation. Her hands are getting worse and her fingers are getting more fused making them smaller. Thank you for all the post she’s gotten. She likes to read the letters herself now.

Update 2nd June 2018

We’ve been very busy Miss Rida wise! We went away which kind of turned into a nightmare. Rida’s throat was all but closed and she was surviving solely on feeds. She was choking on everything, which was hard to watch. She was slamming cupboards in frustration as there was nothing she could eat. We came home mid April and we got her in for surgery asap and had her 5th esophageal dilatation. Her oesophagus was 4mm.

She’s ok throat wise, but is now on the list for hand surgery as her fingers are fusing together. This will be a six week process and very painful. I will update more once we have dates. Currently both are looking forward to Eid!

Thanks going out to every single person. Ellie, Beverley, Bev, Sylvia and Roy, Anna, Wendy and Charles, Rebecca, Badge, Gaynor, Ginny – too many to name but all those who have asked or sent post we are really so grateful as it allows a sense of normality.

Thank you post pals.

Update 1st October 2017

Another admission for Amina and leaving Rida home has left both girls distraught. Amina is currently on day 9 of IVs. She is obsessed with Harry Potter.  Her collection of stationary is still growing too. She’s doing the O2 climb so is looking forward to that.

Rida has had numerous appointments including two cancelled as we couldn’t be in two places at once. She has two very important ones in December. Her class has started swimming and she goes with them but sits on the side and watches … yet another reminder of how she’s ‘different’. She is an avid Disney fan and loves Care Bears.

As always, massive thank you to every single person who took the time to send cards, letters, emails, and gifts. Some names: Ellie, Wendy, Beverly, Bev, Dawn and Steve. There’s so many I can’t name everyone, but thank you.

Update 6th June 2017

Rida is heading towards more throat surgery. She had bloods done recently which was extremely traumatic and she screamed and cried. She also had an accident pulling the skin off her hand and wrist which had to be pushed back as it lifted off like a glove. This was very painful and took ages to heal as the blisters kept reoccurring. Currently her waist and left leg are very very damaged and need changing often.  She’s due a heart scan as she keeps getting chest pains and the doctors are concerned. Rida was upset when Amina went hospital as she is getting older and understands more that the family is split in half.

Update 30th April 2017

Massive thanks to the Post Pals team for the Extra Smiles and In Kind Direct. To Wendy, Bev, Bethany, Vicky and so many others. Without you I don’t know how we would see half the smiles we do.

Rida has a possible overnighter on 4th May and they will decide about more throat surgery. It will be her 5th. She’s due for hand surgery at the end of the year as well. It will be a difficult time as it’s a 6 week process.

Update 4th January 2017

Rida had surgery for her throat at the end of August just before Amina’s admission. This was her 4th throat operation and they told us it had closed to 4mm which is why she was struggling to eat and swallow.
Currently she has massive bleeding wounds on her right leg. These are so severe that they need changing twice a day. They are bleeding right through the dressings. She’s so brave that she never complains and it’s heartbreaking to see the size and extent of the damage on her little leg. Her waist is also very damaged. It’s also got extensive wounds, then yesterday she dropped a shoe on her foot and hurt her toe.
I’d like to thank each and every person that sent letters, cards, gifts, big or small over the holiday period. Christmas was amazing and they had so many gifts. It’s overwhelming how much people who have never met can care. Extra thanks to Vikki for this amazing page and group.

Update 4th November 2016

Rida has been having a very tough time. She has huge extensive wounds on both legs and massive sore areas on her waist. These are having to be changed daily and results in pain and tears. She also has wounds and dressings under each arm and these are fortunately healing. The waist wounds are very deep and bleed a lot. The cream used stings and she cries when it’s put on. There are wounds on her knees and behind her knees and also 1 ankle. This is all making daily life a struggle. We have recently been told she may have a heart problem and are awaiting an appointment from cardiology. She is also going to be referred for surgery on her hands as her fingers have fused quite far up. This is a 6 week process. Her eye is also starting to stick to her lower eyelid and may also require surgery. Despite all this she is always smiling and happy.

Thank you to everyone who has sent post to both girls. Anything no matter the size makes so much difference. The smiles are priceless.

Update 3rd October 2016

Rida currently has a very sore waist, its dressed and bandaged but still painful. She almost took a tumble down a flight of stairs but caught her balance in time. She still twisted her ankle and has a blister on her foot preventing her from running too much. She also has a sore leg and it’s always needing to be re dressed which she hates. On a thank you note, I’d like to thank each and every person for all the amazing e mail, letters, notes, cards and gifts. Especially to Wendy Woo, Ginny and Jessica for their numerous gifts

Update 5th August 2016

For the past 5 nights she has been waking at random times and started to gag, retch and dry heave. She’s saying there is a blister in her throat as these are the usual symptoms. However after almost 2 hours of this and exhausting herself it wore off and she fell asleep. This was Monday night. The same thing happened on Tuesday. Then again on Wednesday when she woke at 3.30am and was up spitting whilst gagging and retching until 5am. There was nothing we could do except hold her and console her. After speaking to her nurses they think she not only needs an emergency oesophageal dilation but also its a stricture that is causing this. When she lays down, pressure on the oesophagus is causing this. Needless to say it’s a nightmare to watch. She’s been booked in for emergency surgery on Tuesday.
Along with this her lower eyelid was slightly attached to her eyeball due to an old blister, this seems to be spreading so we could be looking at eye surgery as well.
She is refusing to sleep due to fear of the waking episodes. She hasn’t eaten for 5 days and is surviving solely on her overnight feeds.

Update 8th July 2016

Rida has had two accidents at school. The first time she tripped over a drain and wounded her leg. The following day another child tripped over her foot causing a huge blister underneath her foot. She is currently unable to wear shoes or walk for long periods of time and is in pain. Then at 2am she woke crying as she had a blister in her throat. She spent an hour gagging and retching while we tried to get her to eat ‘sharp’ food in the hope it would burst. Well over an hour later it burst and she did a blood vomit, then fell asleep as she was exhausted. The following day I went to bath her only to discover her vest stuck to a huge wound under her arm. I had to slowly rip it off and it was horrendous … she didn’t even cry, she was so brave.

I would like to thank each and every single person for their gifts, letters, cards and emails. The look on the girl’s faces is priceless and it wouldn’t be possible without you wonderful people. Thank you.

Update 20th May 2016

Rida has just informed us of a huge blister on the back of her left leg. It’s been burst and dressed. She’s now in pain as she cannot straighten her leg and is crying, also she’s upset as she knows about Amina and doesn’t want her to go to theatre.

Update 4th May 2016

Rida is having problems with wounds on her neck. They are recurring and unfortunately as they are in a strange area they cannot be dressed. Her hair gets stuck in the wound and has to be pulled out. As you can imagine this is very painful, yet she never complains. She now has dressings on both legs as her other leg is also damaged. Surgery also looks impending for her throat – for the 4th time – as she’s choking on food again.Thank you to Post Pals for the butterfly project. They are really enjoying that! Also, thank you for the make up and the dream catcher and jewellery gift from a Pal. Thank you for Rida’s stitch soft toy … even though she was afraid of it at first!

Update 5th April 2016

Rida had a scare recently; she became very unwell and ended up in A&E. It was a very frightening time as her head was effectively ‘leaking’ some sort of fluid, to the point where I was wiping it away for hours on end. It slowly (over 2 days) stopped. She then got a lump on the back of her neck which the doctors said may be cancerous and needs to be checked. Needless to say, our world stopped spinning. We went to Great Ormond St. and had it checked. Turns out it was all a huge infection and the lump was a reaction to the infection. Phew!

She just took it all in her stride. Presently she has a massive raw patch on her bottom, and she had a blister under her arm the size of a large marble. Yet she hasn’t complained or cried once.

Big thanks to Wendy, Claire, Ginny and everyone else. Also to the extra smiles team for the cake!

Update 3rd March 2016

Rida’s skin is sore on her elbow and left leg. There seems to have been an infection because the wound became filled with yellow stuff. It was hard watching her go all quiet and subdued, which is what she does when in pain. It’s now healing but as with her sister, losing her grandad has hit her hard and she is finding it difficult to accept she won’t see him again.

I’d like to thank Ginny and Wendy and everyone else for all the post, cards, gifts, emails, and massive thanks to Sarah Torode for the extra smiles boxes and the balloons.

Update 22nd February 2016

We just had to make an unexpected trip to Pakistan as the girls’ grandad passed away. It was so sudden and shocking as he wasn’t even unwell. They are devastated and the extra smiles boxes really could not have come at a better time. They managed to put a huge smile on their faces. Rida is ok, she has some really sore areas but was too sad about losing her grandad to complain. It was horrible seeing her so upset. Now we are home they are even more upset because they say granny is on her own. Apart from this, onwards and upwards. Massive thank you to Ginny, Wendy, Anne and the school in Cyprus for the presents. Also to everyone who wrote an email, letter, card, etc. thank you all so much.

Update 21st January 2016

Rida is very sore. She has large wounds on the back of her leg and is having dressings done almost daily. It’s heartbreaking to watch. How she isn’t screaming in agony is beyond me.

Onto the thank yous. I don’t even know where to begin! I would like to thank each and every single person for all their letters cards, gifts, emails and messages.

Update 5th January 2016

Massive huge thank you to each and every single person that sent cards, letters, presents and even emails. You guys seriously have no idea of the smiles you are making possible.
Wendy is our regular sender so a huge thank you to her and also Claire. There’s so many I don’t know where to start.

Rida has hurt her foot – again. And yesterday she got too close to the DVD player, head butting it and taking a bit of skin off her forehead. Then today she got hit in the face with Iron Man whilst playing with her sister and now has a nasty wound on her chin. Not a good way to begin school. She has a big appointment coming up and may need some help in the form of foam or wedge-y type things in her shoes to bring her feet out as they are starting to turn inwards, causing her to hunch. Not sure how she will react to this.

Update 3rd December 2015

Rida is having an emergency operation tomorrow as her throat is closing up due to scarring. She was okay about it, but seeing her sister Amina upset has upset her too and now she also cries at the smallest thing. To sum up, I have two very poorly and very sad children at the moment. Saying this, I am hoping to take them both to Lapland on Wednesday, so please send positive vibes that they are well enough to go.

Update 25th September 2015

Rida has hurt her foot quite badly, and she also ended up in A&E with chest pains a few days ago. The chest pains were viral and are now a little better. Her foot is slowly healing, but she has had a lot of time off school already. Her ear is also sore and there may be an internal infection. She’s already had one infection.

Amina is due a hospital admission, and the worst part of all this is it’s Rida’s birthday on the 8th of October and it seems more than likely we will be in hospital with Amina during this time. There’s no way around it and we will have to celebrate afterwards. On the upside, she’s looking forward to seeing how many cards she will get from her Post Pals and if it will be more than Amina!

We have been given a new house, so should be moving in the next week or so. I will be running backwards and forwards from the hospital to the house, as I want the girl’s room all decorated before Amina comes home, as a surprise.

Lastly, there is still no improvement on my hearing and life is very difficult at the moment.

Update 6th September 2015

Rida had an appointment recently and was told she had an infection in her wound that could be potentially dangerous, so she’s now on medication. She also had a blood test done and had to be held down by three people, which was very distressing. The physio has also told us she will need special soles made to put in her shoes as her feet are bending inwards. This should fix the problem over time.

Thank you for the girls’ post. Please can I ask that Rida isn’t sent any small plastic confetti in cards though, as there was a bunch in one of her letters and as she opened it, it hit her in the eye, resulting in a damaged eye. Thanks again.

Update 6th July 2015

Both girls are now home but they are slightly struggling with the heat due to their illnesses. It’s particularly hard for Rida as she has all her dressings on and then her clothes on top. She also isn’t allowed to drink anything so that makes it even worse. I hope it doesn’t get too much hotter.

Thank you to Wendy for the sticker books and also to the paper cutting group. I got a beautiful frame and so did Rida. Big thanks to Emma Jenkins for my frame and gift, it made my day!

Update 18th June 2015

Rida is in a great deal of pain at the moment. Due to summer weather, her dressings are making her itch more than usual and causing new wounds. She has a big sore on the back of her left knee which means she has been unable to stand straight for almost a week now. It heals and then she scratches and we are back to square one. It’s not always easy to bathe her as bathing can be painful and we are running out of distractions. At the moment I’ve been doing her dressing 4-5 times a week, which take up to 1-2 hours at a time and is extremely hard work, as you can imagine.

Hopefully now Amina is home from hospital we can concentrate a bit more on Rida. I don’t know if I’m coming or going at the moment, and Ramadan also started today so we are now fasting as well.

I wouldn’t change my girls for the world. My beautiful princesses.

A massive thank you to the ‘we love paper cutting group’ for Rida’s frame. Thank you for all our post. I love you all lots for the smiles you put on my girls’ faces. Words can’t describe the meaning and importance of what you’re doing for these children!

Update 16th June 2015

Amina’s on day 17 in hospital with no news of when she’s coming home. Rida is really missing her sister now as they have never gone this long without seeing each other.

Update 30th May 2015

Gigantic thanks to Wendy for the banners to go in their room, and especially all the care and consideration she took to ensure they are suitable for the girls! Thanks also go to Post Pals for the Wreck Journal and thank you for Rida’s dolly which she adores!!

Update 26th May 2015

Rida is well at the moment but is upset seeing Amina so unwell. Amina is waiting to be admitted to hospital for IV antibiotics.

Times are hard and frustrating at the moment and I still have no hearing.

Update 2nd May 2015

The girls are doing ok this month, although we have had some very bad news. I have unfortunately lost hearing in both ears and am now totally deaf. Doctors are baffled as it happened over 10 days. The girls are coping very well and at the moment we communicate via writing and a board. Amina writes what she wants to say and Rida just uses hand gestures. I am still having various treatments so hopefully it comes back. It has made things extremely difficult in terms of communicating with Amina and Rida’s medical professionals. Amina is due a hospital admission soon and my hearing loss is going to make things a lot harder.

Update 5th April 2015

I can’t tell you how happy little miss has been because all the well wishers have ensured she hasn’t been left out as it was Amina’s birthday recently. However she received so much stuff as well she though it was her birthday too!

Update 25th February 2015

Rida had surgery on her hand on 10th February and 17th February. Then on 24th February she had another surgery and rather than taking five teeth out as planned, they took out seven!

My CFer, Amina, started coughing madly and so was admitted to our local too. Now that Rida’s had her final surgery though, we are waiting to be moved to Brompton. It seems Amina could be in hospital for her 10th birthday too!

Here’s my routine for at least the next two weeks. Take Amina in to hospital every night for 9pm to have 10pm IVs, go to sleep, have 6am IVs, wake at 8am to drop her at school, pick her up at 3pm to bring her to hospital for more IVs, go home, then come back at 9pm and do it all again!

Safe to say February has been a very hard month for us, but one thing the girls have had to look forward to is their post from Post Pals. We love you all!!

Update 1st February 2015

Post Pals is doing a fantastic job and whenever we get post the girls come running and say ‘mummy is there anything from Post Pals!’ Lots of love and praises to you guys!

Update 26th January 2015

I just wanted to say the girls have started getting post and I cannot tell you how happy they are! It was so nice to see them with such huge grins every time they got something!

We have a very challenging couple of months coming up. Rida has surgery on her hand on the 10th February and then needs to go back once every week for three weeks in order to be put to sleep again and have her dressings changed. She will also she will have 5 teeth removed.

During this time Amina has her IV’s admission and it will be very hard to juggle both sets of admissions, especially as their respective hospitals are at the other end of the city from one another. Wish me luck!