Our Pal - Rachel H

**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. Rachel now goes by  the name Ryoo but we are currently unable to change the name of her page. Since her cardiac arrest she finds her original name upsetting so please address her post to Ryoo**

Story written 2017

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

In January 2012 Rachel was taken by ambulance from our local A&E to the Freeman Hospital. Rachel 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 Rachel determined to keep going I decided to fight with her.

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

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

When we told Rachel 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 Rachel  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 Rachel when the call came that Rachel 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 Rachel the next day, she was covered in wires but she was awake and I could see those blue eyes. Rachel 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 Rachel, life has changed but Rachel embraced these changes.

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

Rachel’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 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 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