Safaa M

03 November 2014

**Please only send food/sweets suitable for vegetarians. Please don’t send sweets containing gelatin or alcohol**

Story written 2014

Safaa was born on the 24th April 2009. She was our first child and both my husband and I were very excited. She was born on time and was a normal healthy baby reaching all her milestones. After 9 months’ maternity leave I went back to work part time and Safaa’s dad was working full time. At age 11 months we gave her the normal routine vaccinations, she had been fine with all the other previous ones so had no reason to worry about these ones. However, this time round she became very poorly with flu like symptoms and generally being very upset, constant crying, not feeding and not sleeping for nights on end. Her eyes, arms, legs and head were also shaking constantly. Safaa was able to stand and cruise however within a matter of a week she lost her ability to do so. Her body was shaking/trembling involuntarily and she could not even sit up.

On 18th April 2010 we took her to the doctors and got sent straight to Preston hospital. We could see that the doctor was clearly worried but we had no idea and were not prepared for what was to come. The doctor did some examinations on her and more doctors followed one after the other. Safaa would not let them check her and would scream and cry, she was not my happy little baby.

A consultant neurologist then came and told us his initial thought was it is a rare type of cancer called neuroblastoma and associated illness called ppsoclonus myoclonuss syndrome. They then carried out a series of intrusive tests and scans. They did ultrasounds, MRI, blood tests, lumber punctures and lots of other things. My poor baby was being poked and prodded everywhere. I spent my first night in hospital with Safaa, however she did not sleep and cried all night.

The next day we got told the test results were back and it was what they thought – she had a neuroblastoma tumour next to her spine. I again had another first – a ride in a hospital ambulance. We got transferred straight to the specialist hospital Royal Manchester Children’s Hospital which was then to be my home for the next five months. That was also my last day at work. At Manchester Hospital they re-did all the scans to ensure the cancer had not spread further and fortunately it had not. My husband came with all bags packed with clothes and we got given a room to stay. Everyday was the same, Safaa would be unhappy, constantly crying, would not eat, and on top of that she was physically deteriorating. The constant medicines, being hooked on machines, and being surrounded by nurses and doctors made it worse.

Her 1st birthday was in the Oncology ward at Royal Manchester Children’s Hospital – the nurses threw her a surprise party which was very sweet but she was far too unwell to enjoy it. We got told she would need six hours of surgery to remove as much of the tumour as possible. This was scheduled for 20th May 2010 and we got started on an initial course of treatment. It was a waiting game until 20th May, we were all very anxious and did not know what to expect. Dad also had to take time off work. Family visited everyday and it was very tiring for us physically, mentally and emotionally. We did not know what the future held.

The 20th May 2010 came and the surgeon went through all the pre-op procedures and asked for consent. We got told as the tumour is so close to the spine there was a chance of paralysis. I could not sign the consent form so dad had to do it. Six hours of waiting seemed like six days. By the grace of God, the majority of the tumour was removed, however they could not get all of it due to being next to the spine. The tumour was the size of two balls. We were very relieved and thankful the operation went well.

However this was only the beginning and the real hard work was now to start. Safaa got an infection during the operation so had to be in ICU and we got told the opsoclonus myoclonus syndrome was very rare and that was a big problem as it would affect her developmentally. In September 2010 we got transferred to Preston Hospital where we stayed for nearly another nine months. She was on lots of medication – steroids, IVIG, dexamethsone, chemotherapy. Our lives revolved around hospitals, physios, dieticians, OTs and lots of other health professionals. We got given a room full of equipment as she could not stand up, walk, talk, eat or sleep. It was all very hard. She had a standing frame which we had to strap her in everyday so she could stand, walker to use but she could not stand so that was pointless, special table and chair, helmet etc. At nights she would be given medicine to knock her out so she and we could sleep. She got given a gastrostomy which is a button in her tummy so we could give her milk.

We decided she needed to go somewhere and after research we found a specialist nursery near Ormskirk called The Legacy Rainbow House which specialises with disabled kids. We spend two hours a day driving to take her there and back. Safaa started there in January 2012. In April 2012 after her 3rd birthday, she took her first very wobbly independent step! Three years on Safaa was still not the happy child we knew though, she would still wake up crying, feeding was still a problem, and she would get very angry as physically she could not do what her peers were doing due to only being able to walk few steps and then falling and having difficulties with her gross motor skills. We were still going for regular scans to check for the neuroblastoma as well as meeting other specialist with regards to the opsoclonus myoclonus syndrome. We were being seen at Preston hospital, Manchester hospital and Liverpool Alder Hey hospital!

Safaa was 5 on April 2014 and the weekly appointments still continue. She has two weekly blood tests and is onto her second round of chemotherapy. She will have had her chemo for 2.5 years now. She gets a lot of side effects from it, however, as she is now older she understands more that doctors are helping her to get better. She also now attends a special needs school full-time and also goes for her two hourly conductive education sessions. She is now much happier, can walk short distances independently, but still has very poor balance and coordination so uses a wheelchair most of the time. Her feeding is improving slowly – she loves chocolate (who doesn’t!) and sleeps at night without medicine. Her eyes and legs do still shake which means illness is still not cured and there is still a long way to go, but along the way we have met and made friends with some very special and incredible children and families.

Update 28 February 2024

Thank you so much for all the post, they do bring us a lot of smiles!

Safaa has had a difficult year. Mid 2023 she stopped eating by mouth completely for most of 2023 and towards the later end of the year – December and New Year – was very ill and in hospital. Throughout all this she was very strong and remained happy. We also realised she can not feel a lot of pain when injured and has a very high pain tolerance/threshold with not even crying or flinching, which is both good and bad at the same time.

Safaa is in year 10 in high school, she has got official diagnosis of Learning Disability and also testing for Autism. She likes school but struggled with the transition to upper school, change is difficult for her to process and took long time for her to settle in her new class environment. 

Safaa loves going shopping, her favourite is Primark, and going to the cinema is a new favourite thing she enjoys. Her other interests remain the same. She now has a mobile phone of her own!

Abubakr is in year 6 at school and is doing well, he is a blessing and really looks out for his sister and younger brother. Sometimes I feel he feels the pressure of looking out for his sister and helping her. His interest are still the same, he absolutely loves football and anything football related.

Muhammad Ali is in year 3 and is a happy chappy and he follows his brother’s hobbies and interests!


Update 27 October 2022

Thank you to each of you that have been sending posts to the children it is really appreciated as brings much happiness to them.

Safaa is in High School although she doesn’t enjoy it much as she doesn’t have friends, it’s sad for her and unfortunately this has been the case throughout most her school life. She has very low self esteem and has begun to just stay in her bedroom most days. 

Her health has also been very up and down she has been off school alot, still has the gastrostomy and her gross/fine motor skills continue to cause issues alongside normal teenager hormonal issues!

Abubakr is in year 5 and is very independent happy at school and home and in good health.

Muhammad Ali is in year 2 and apart from the normal coughs and cold is doing well.

Both boys play for a local football team at the weekend.

Update 21st April 2021

Thank you so much to everyone for all the posts we have received during the last few months we are very grateful – happiness during a daunting time. Medical appointments have restarted again, nothing much has changed in terms of Safaa’s health, slow baby steps.

Let’s pray and hope for a better second half of the year.

Update 12th September 2020

Thank you for all the post especially throughout the lockdown period!

Safaa’s hospital appointments have been via video call with her consultants she has been provided with more ‘equipment’ to aid her daily life such as bath support, stairs and in bedroom and still continues with the medical therapies and milk feeds etc for the foreseeable future.

Safaa has now started high school prior to starting she had extreme anxiety and headaches and vomiting causing her to be in bed however has adapted well to the new school now which is very supportive they are in a small bubble of 4 kids.

Muhammad Ali has also started reception school now and is enjoying it.

Update 6th October 2019

Things have been the same with Safaas health, she has extremely bad days which makes her stay in bed all day and sometimes she has ok days. The days when she is poorly really do take it out of her as she is in a lot of pain and has absence episodes. The recent dietitian appointment outcome was still to continue her feeds and she also has her weekly 1:1 physio sessions to strengthen her legs and core for her balance and stability, along with all her other hospital appointments for her eyes and her weak teeth and Orthotics. We are trying hard to help her manage her ’emotions’ and feelings of ‘being different’ with schools support.

Thank you so much for all the ongoing support everyone provides us it makes such a huge difference to us and it is a source of comfort for Safaa and it makes her feel happy

Update 3rd July 2019

Thank you for all the post. Safaa has been quite ill the past few months and has been off school a lot. She’s been struggling a lot with her behaviour and has been feeling low and crying a lot for no reason saying she feels sad. The post is really helping her to feel special so thank you to everyone.

Update 11th February 2019

Just want to say thank to everyone for all the post. Things are the same; it sometimes feels like two steps forward and one step back. Safaa has been struggling recently. She’s having weekly physio to help her legs. Thank you for Abubakr’s post, he really looks forward to it and appreciates it.

Update 1st November 2018

Just want to thank everyone for the posts you are sending it is really appreciated and eagerly awaited. Safaa has had a rough few weeks she had been vomiting a lot daily – sometimes several times a day making her weak. We have also been trying very hard to toilet train at night time but due to being ill this has not been going very well and milk feeds have to commence.

The boys are doing well at school and nursery, I’m finding Safaa and Abubakr are getting along slightly better which I am really pleased about. There are still jealousy issues on his part but not as much as in the past.

Update 10th September 2018

Thank you to everyone for the post throughout the holidays. The holidays were a bit hard as we were all ill on and off and it was bit difficult with Safaa. There were days where she would stay crying in her room either in pain or just anger/frustration.
The post to distract her and keep her occupied was very helpful, so thank you.  Her left leg has become quite weak again and she had been falling and generally more wobbly.
Safaa has found a new interest – she likes threading beads to make bracelets, it is a good activity for her as it takes her a long time to do it, so keeps her entertained for good few hours and improves her fine motor skills.

Update 3rd June 2018

Thank you for all the post and the amazing trip to Chessington. Safaa has received a new, bigger wheelchair. We are trying hard to get her out of nappies but it isn’t happening at the moment what with the milk feeds daytime and overnight. She is getting to manage her hand coordination and tremors a bit more, but still has many accidents. She still shakes and has body tremors at night.
We are due to see her specialist consultant based at Evalina Hospital, London, soon to see what the next plan is.

The specialist psychologist nurse has been visiting at home and, as we thought, Safaa has sensory processing issues which is normal with brain damage conditions (I sometimes feel the behaviour management is more hard to manage than everything else with the constant tantrums/anger).

Abubakr is nearing the first year at school and is doing well. As he is now able to understand, he did have some issues recently about feeling not ‘loved as much’ and ‘Safaa gets more’. We have tried to explain to him but it’s still not easy for a young child.
He has done some fundraising at school for Post Pals.

MuhammadAli has started nursery – we started him early, as it was now difficult taking him to appointments and dragging him along everywhere being older (2 years old) so it’s easier for us and he’s happy at nursery.

Thank you once again to everyone.

Update 5th January 2018

Winter months are always harder for Safaa as she gets more ill with her low immune system which means it takes longer for her to recover. She’s had sickness which took it out of her. We are having the difficulty as well with her mental state of mind; controlling her moods and anxiety, feeling low and not understanding, being aggressive/sad. Her relationship with Abubakr is also hard at times, although I do have to praise him for his patience and kindness even at such a young  age. Safaa has been falling a lot, she’s lost her balance on stairs and fell, still on night pump feeds and daytime too. She is still wearing nappy pants. Her ASD testing is continuing. She’s had some absence seizures again. This affects her overall and she becomes vacant, so is having to use a wheelchair sometimes which she hates. Her mickey button has been causing her discomfort and she’s tried to pull it out (which is very painful).  Thank you to everyone for all the post we have received, it really helps to motivate her and keep her upbeat and also helps to keep Abubakr happy, as I feel there are times he has to go without/he gets the short straw so we can manage Safaa at home and hospital visits.

Update 5th October 2017

Safaa has been having up and down days. At school she’s been tearful and not eating, and we’ve noticed she’s having difficulty using her hands to hold things like cups and spoons, also her arms are shaking as she tries to hold things. She is on full overnight pump feeds again.
She has had her tests done to check Neuroblastoma (as a precaution) to see if that is contributing to her reduced gross/fine motor skills or if it’s OMS – that was hard for her at hospital.

Abubakr has started primary school in reception class and is very excited and enjoys it, however Safaa is quite harsh towards him as he already knows more academic stuff, which she doesn’t, and that is causing a lot of upset/anger/jealousy.

Update 7th May 2017

Thank for all the post received especially the huge amounts of birthday cards for Safaa’s 8th birthday, they were all amazing.  All 3 kids have been very poorly this month. Safaa has become very emotional and constantly cries and says she doesn’t know why she’s crying. One of the main symptoms of her OMA illness is its makes the child irritable/upset. It can get very draining as any small thing triggers her off and the crying can last for 30-40mins at a time and turn into tantrums, etc. At times she’s been losing her balance and falling which again makes her angry. She has also been questioning why she can’t read like other kids. We are due to have her first appointment with  CAMHS to try and help her deal with it all. Safaa’s doctors have suggested having tests done as the deterioration may mean something further is wrong. Thank you also to Extra Smiles & Stuff in a Box.

Update 8th February 2017

Since Christmas, Safaa has deteriorated and had been showing signs of relapse of OMS. I was hoping and wishing it was just a bad spell with it being winter however the last few weeks she has lost the ability to walk by herself safely without support, her eyes and body is shaking and the worst she is constantly upset and crying which is unfortunately a symptom of her condition – it makes the child very unhappy/irritable. At school she has been sleeping most of the days and at home too. When she is awake she has been having episodes of ‘absences’ similar to epilepsy type seizures. We are waiting on the doctors to maybe do EEG of brain activity and also to restart medication again. Fingers crossed she doesn’t have to restart chemo.

Update 5th January 2017

Firstly, thank you very much for all the amazing post we have received from everyone especially during the Christmas period. It was truly fantastic and brought lots of smiles. Safaa’s health has been ok, she is off all medication at the moment, but has unfortunately had to restart her pump feeds during the day as well as night. She is trying very hard at school and has managed to write her name which we are very proud of. She has lost her balance several times and fallen down the stairs, she also fell and cut her head open which meant stitches – this is going to happen, as on poorly days she loses her mobility. Safaa is now involved with the Learning Disability team who I’m hoping will be able help her more.

Safaa’s brothers Abubakr and Muhammad Ali are both doing well. The playhouse present from Vikki is still as amazing, the kids play in it all day long and call it their secret den.

Update 28th November 2016

This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.

We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate. The doctor has said any sign of relapse in her physical ability and we will need to have a look at the tumour again to check it has not grown.

Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. She has also been not eating very well so we’ve had her pump feeds on in the morning.It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.

Update 3rd October 2016

This has been a busy month. Firstly a huge thank you to Postpals for the incredible Chessington weekend away we had the best time so thank you Vikki and team x
Safaa and Abubakr received the awesome playhouse which is a big hit and taking pride of place in the living room! And also the lovely scooters which they are having lots of fun playing with. Thank you for all the lovely letters and cards everyone has sent.

This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed Due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 5/6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.

We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate.

Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.

Update 11th July 2016

It was our Ramadhan last month where we fast for 30 days from sunrise to sunset, which is approx 20 hours without water or food. We had our Eid day on 6th July which is a big celebration and lots of eating!
Safaa has been finding things a bit difficult. She has started to question why she is ‘different’ and has to have medication, wear nappies etc. This not understanding is also affecting her behaviour and making her upset. She keeps saying she wants to read and write. It is also upsetting for us as parents to see that she is struggling to deal with things. She is seeing a psychologist but I think she is still a bit young to understand what he says to her.

We have started toilet training Abubakr and he is getting lots of rewards when he manages to go without accidents.

Looking forward to the summer holidays and plenty of fun and hopefully sunshine.

Update 4th May 2016

Safaa’s had a very busy few weeks where she has done lots of special things. She was a mascot for Preston North End Football Club, where she got VIP treatment and got to meet all the players and watch the game. She then did a 5 mile charity walk in her wheelchair with me and her dad, and raised £548 for a charity called Rainbow House where she attends once a week to do physio and conductive education. Then finally it was her 7th birthday and got lots of presents.

Thank you everyone for all the post.

Update 3rd March 2016

Safaa has started seeing a psychologist again to try and help her with her behaviour, etc. We have been blessed with a baby boy and have named him Muhammed Ali, so Safaa now has 2 younger brothers! Thank you to everyone for all the post and the lovely Valentines balloon.

Update 10th February 2016

Safaa has been poorly since Christmas and she just does not seem to be getting better. We have had to also start her pump feeds during the daytime and she has been getting very tired. Since last week she has had very poor balance and has had problems walking without help. She is getting very upset and also angry at the same time. She has been in hospital over the weekend and her little brother is also a bit poorly at the moment. Hope things settle soon as I am due to give birth in 2 weeks! Thank you for all the lovely gifts.

Update 6th January 2016

Thank you to everyone for the lovely post we have received, they were all fantastic. We have had to increase Safaa’s medication this month, as there have been days where she’s not been able to stand up. She’s had a few accidents at school, losing her balance which resulted in her cutting her head so had to go hospital. The increase in medication has been affecting her moods and she has been having a lot of tantrums. The post nearly every day has been very helpful to calm her down, especially all the girly gifts she’s received. Also we stopped her night feeds for a trial but her weight has decreased a lot so have had to restart that again. Hopefully the new year and school routine again will help.

Update 5th November 2015

Thank you to everyone that has sent post this month. Safaa always enjoys the monthly post from Jess, and got a lovely bracelet from Iba, a doll from Helen, and lots of other nice post.

Update 7th September 2015

Safaa was granted a wish to go Disneyland Paris this month and it was really good and we all really enjoyed it. She did get very tired, but overall had fun.

Recently she has been getting more tired and her tremors/shaking has returned, particularly at night time, which wakes her up (a symptom of her OMS condition).

Thank you for all the post received this month from Jess, Dottie and all the other lovely people. Abubakr also received his Paper Cut, which we love, as it is his favourite Mr Tumble theme.

Update 6th August 2015

I just want to say thank you for all the post. The summer holidays are always a bit harder entertaining the kids and the lovely cards, letters and gifts have really helped.

Update 7th July 2015

Safaa is doing well with her medication and has not had many low blood counts recently. She is also eating mainly by mouth now which is a huge milestone.

Safaa’s little brother, Abubakr, celebrated his 2nd birthday on 26th June and we had a little party in Pizza Hut. They both loved the pizza and especially the ice cream factory.

Thank you for the lovely paper cut gift, it is hung up in her bedroom. Thank you for all her other lovely post too.

Update 1st May 2015

Safaa is having more frequent low blood counts and is getting a lot more infections and colds. She has also started seeing a psychologist to help with her behaviour issues.

Every day she comes home from school and always asks if she can open her post, so thank you to everyone that has been sending her post. We try our best to reply to each post but sometimes due to time and other commitments I forget, so apologies and thank you to those whom I have missed replying to.

Update 4th April 2015

Thank you for all the lovely gifts Safaa has received this month. She really likes the bath soap, Easter egg, handbag book and a lovely magic wand. We all really appreciate it.

Update 3rd March 2015

Safaa is doing very well, she is physically getting more mobile and can walk a very short distance. Her speech is coming along well too and she is eating more by mouth. She has started a new daily immune-suppressant medicine but her blood count gets very low because of it and she has been getting very tired and ill.

Safaa really enjoys the post she receives, thank you to everyone.

Update 29th November 2014

Safaa absolutely loves coming home and opening her post. She has been in hospital since Wednesday and it really cheers her up.

Update 6th November 2014

Having had chemo for almost 3 years it is now being stopped this month. Prayers needed as the last time it was stopped she relapsed. She will also be due to start taking daily tablets which for a 5 year old will be very difficult.

I just want to say thank you so much for the balloon yesterday as Safaa was so thrilled by it, especially as it was Frozen. Also from me as a parent, she received four items today and I had a few tears because it made such a nice change to receive ‘nice’ post instead of the usual hospital letters.

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03 November 2014

Story written 2014

My daughter Annabelle became ill on the 7th December 2012, just one day after I’d given birth to my fourth child, a little boy. She had all the usual signs and symptoms of a bug and a quick telephone call to the doctors confirmed that was the case and we were to dose her with Calpol. We did but she deteriorated quickly and within 48 hours she was in hospital fighting for her life. We were told it was meningitis and our world fell apart. I was re-admitted to hospital myself with an infection in my Caesarean scar. My 2 older children had to be shipped around the country to be cared for by relatives. Lee (my partner and Annabelle’s Dad) had to sort out work and we had a three day old baby we were meant to be bonding with. All this was happening at what was meant to be the happiest time of the year.

Annabelle spent a week in our local hospital on the high dependency unit and although doctors were pretty certain she had meningitis she was too poorly to have the tests and procedures to confirm it. In the doctors’ words, she was too unstable. After a week with no confirmed diagnosis Annabelle had a seizure lasting an hour and 45 minutes. They couldn’t stabilise her and we were warned if it continued that way she would need to be transferred to a specalist London hospital. Sadly that’s what happened and after taking a turn for the worse she ended up on life support. Christmas passed in a blur and we were told to say our goodbyes.

However, after numerous MRIs, lumber punctures, CT scans and blood tests, we finally had a diagnosis – ADEM. It’s a very rare brain disease – her brain was swollen and her spinal fluid was affected too. Things couldn’t get much worse, our lives had been shattered. What made it worse was that because ADEMs is very rare doctors couldn’t tell us exactly how things were going to turn out. She was started on a cocktail of drugs and steroids to attempt to bring the swelling down and all we could do was pray and wait.

Somehow by the grace of God, miraculously the swelling started to go down and after weeks on life support she was finally off it and was eventually transferred to a neurological ward. Although immensely pleased she was off life support and breathing for herself, we were distraught by the ‘shell’ of the happy, cheerful, energetic little girl she once was. She couldn’t do anything now, couldn’t move, speak, smile, swallow, chew or even move her eyes. Her doctors warned us our newborn baby would be able to do more and they were right. Her muscles had totally given up and she had no muscle control whatsoever. She was put on an intense physiotherapy course and had a specially adapted wheelchair made, we took her on ‘walks’ round the ward and together the combination of medication, physio and love from both us and the staff we started to see improvement. Then, out of the blue, E. coli hit the ward and unfortunately Annabelle got it and it put her straight back to square one. She had a long road ahead but kept fighting. Three months in hospital and once again things slowly started to improve. Eventually she was transferred back to our local hospital, then another month later armed with medical supplies and medicines we finally brought her home! This was wonderful news, however it wasn’t without its problems and life changed for us all. We had physio and therapists in and continued to encourage Annabelle to talk, sit, stand, swallow and eat.

She is doing fantastically well now, so much so that to look at her you wouldn’t even know that there’s anything wrong. She still has muscle weakness, swallowing/throat problems, hearing and sight impairments and suffers with extreme exhaustion. We’ve been told by her neurology doctors that one of the main side effects for her will be constant pins and needles and nerve pain as her brain attempts to re-wire itself. The strangest sensations can cause pain, irritability and confusion. She takes her cocktail of drugs like a real trooper, even administering them herself once I’ve measured them out. She regularly goes under anaesthetic for MRIs and different procedures. She’s on a waiting list for counselling as recently she’s having trouble expressing herself and her emotions and understanding what’s happening to her.

We count our blessings everyday and although she’s never been the same little Annabelle I gave birth to, we are very fortunate she is still here with us.

Update 15th April 2016

Annabelle and her family are now moving on from Post Pals, we would like to wish them all the very best for the future, Annabelle’s Mum said this:

We would like to say the biggest thank you ever to every single person that has taken the time to send all the very lovely messages, letters, cards and gifts to both Annabelle and Aimee during their time with Post Pals. I can assure you every single thing they have received has generated lots of smiles and happiness.

Annabelle now has a friend for life in the name of ‘Spotty’ whom accompanies her when she’s in hospital and to appointments (Thank you to Clare Bray) Both girls also have lots of postcards from around the world which they have found very interesting.

Post Pals will always have a very special place in our heart – Thank you for helping us through a very tough time.

A huge Thankyou to Vikki George too your work is truly inspiring.

Update 12th March 2016

Nothing much has happened this month, our house has been hit by all the horrid coughs, colds and bugs floating about, which combined with all her usual aches, pains and problems didn’t make for a happy Annabelle. She’s also has had to have new glasses which we collected this month.

Update 13th February 2016

This month Annabelle saw her ENT specialist. He advised a tonsillectomy as her tonsils are so big and have been for over three years now. They are causing her problems with her swallow and pain. They will test them when they are taken out to find out what was making them so big. We are now just awaiting the date, she has an appointment in March for the pre-op assessment.
She also had an appointment this month with the ophthalmologist who examined her eyes using the drops (that Annabelle hated having!) and then we saw the consultant who told us there are no big changes with her vision.
Thank you to everyone that has sent the girls post this month.

Update 6th December 2015

We’ve found out this month that Annabelle is going to need surgery to remove her tonsils. They’re so enlarged that they are what’s causing a lot of her eating/throat issues. We are now just awaiting an ENT specialist doctor.
Annabelle had more physio this month and we had the news that her muscles are imbalanced. She’s being put on a block of therapy. Although it’s not nice to hear it gives us some answers as to why she’s in such pain with her legs and joints.
Some good news though..our little lady went up a group at swimming! She’s been in the same class for a year and a half and has always struggled to find the strength to swim… well finally this month she did it! She swam all the way across the pool without stopping and has been put up to the next group in the bigger pool! We are so proud!!
Thankyou to everyone that has sent post this month. Happy Christmas to you all, Thank you for thinking of our family.  

Update 5th November 2015

Annabelle’s had her seventh birthday this month and we would like to thank everyone who sent birthday cards and gifts. She also had feeding clinic this month where we discussed aspiration and the pain Annabelle’s been experiencing on swallowing for which we have now got to go to the GP. We’ve had to resort back to medication for the neuropathy (nerve pain) as it’s become quite bad this month.

As always thank you to everyone who has sent post to both Aimee and Annabelle, it means such a lot.

Update 22nd October 2015

Annabelle had a hospital appointment up in London this month with her neurologist. No changes to report, the same problems are still there and there’s no quick fix as it’s just a case of waiting till her brain ‘adjusts’ itself. We saw her MRI results which showed the lesions are still there but have not got worse, apparently this is quite common and he said her brain will probably never totally recover and be how it was before. Annabelle and Aimee say a huge thank you to everyone that has sent post this month and Annabelle says an extra big thank you to everyone who sent birthday post. Thank you all.

Update 12th September 2015

We have nothing much to report this month as there’s been no real change and we are just plodding along.

We are pleased that the weather has finally started to cool down, as the heat exacerbates Annabelle’s symptoms and it means she can now go out for longer periods.

We have had to pay a visit to the optician as she is still complaining of pain in her eyes. They did an eye test but nothing was spotted and so we have to wait for our next ophthalmic appointment.

Thank you to everyone for all the lovely post you have sent. Post always makes a difference to Annabelle and Aimee, but has especially helped this month, due to Annabelle spending a lot of time indoors.

Update 8th August 2015

Annabelle was sad to miss the last few days of her school year before she broke up for summer, as she just wasn’t well enough to go and needed to spend time in bed regaining strength. During the first week of the holiday she developed an infection, on top of her usual problems, that really knocked her. It took weeks for her to recover from it.

We haven’t been out much so far, apart from the odd trip to the corner shop. This because the heat really knocks Annabelle, making her feel ill and lands her back in bed. It’s hard when her friends are out on day trips to the beach, but health always comes first.

Annabelle had hospital again this month for her eyes. They told us she will need a visual field test next visit.

Thanks again to everyone who has sent post to both Annabelle and Aimee as it really does help keep spirits up.

Update 7th July 2015

Not much has really happened this month. The heats exhausts Annabelle and makes her feel sick and delirious, so this month has required a few days off school. Her hypothalamus (part of the brain that controls body temperature) was damaged by her illness and as a result doesn’t function properly, meaning she can easily overheat or get too cold. We have to keep a close eye on what she wears, as she will often wrap up too warm (on the hottest day of the year she had a thermal vest, a pair of tights, leggings, a jumper, and a coat on), which of course can have serious consequences. The hot weather in general causes relentless fatigue and muscle pain and Annabelle will often be found taking regular naps throughout the summer season. We know it’s what she needs to keep going, but she’s been getting annoyed and frustrated with herself, it’s like her brain is telling her to do something but her body can’t.

Thank you for everyone’s kind cards, letters and gifts this month. Lots of love to you all.

Update 6th June 2015

Nothing much has changed really this month. Annabelle’s legs are still giving her grief which sent us back to the doctor but unfortunately there’s nothing they can do and we just have to carry on with her physio programme of exercises. It’s just part and parcel of ADEM and the nerves re-wiring themselves. She had her ENT appointment this month and she still has hearing loss so we have to go back in three months. She also had an optometrist appointment and her eyes are still the same and haven’t got worse, which is great news! We are still awaiting the results of her blood tests regarding coeliac disease too. We had to take a trip back to the speech and language therapist again this month as her swallow is still causing her problems and has come back with a bit of a vengeance these last few weeks. We’re keeping a diary and will go back in a few months.

On a brighter note… myself, daddy, Annabelle, and her little brother, Teddy, had a lovely reunion with the paramedics that came to our aid when she first became ill. It was a touching, albeit emotional, day that we will never forget and it was featured in our local paper.

Thank you to everyone who has sent Annabelle and her sister Aimee post this month, it really helps them and means so much to us. God bless you all.

Update 3rd May 2015

This month Annabelle has been back and forth to the doctors querying Chron’s/coeliac disease as she’s been in a lot of pain with her stomach, has been very lethargic and keeps getting bad bouts of diarrhoea. It’s been hard to keep her spirits up and we are now awaiting test results.

She had her ENT appointment yesterday where the doctor diagnosed her with SSHL (sudden sensorineural hearing loss). She’s going to see her again in a few weeks to re-test and if it hasn’t cleared up she will further refer her on to a specialist. The doctor thinks it may be to do with the nerves having been affected by the encephalitis.

Muscle pain and leg spasms have been catching Annabelle out a lot this month, so much so that she may have to go back on her nerve pain medicine. However, some good news is she finally learnt to swim this week after years of trying! She can’t swim far because of the body weakness and the muscle pains, but she actually swam!

She was called up for some blood tests to check if the anemia had gone but it was still present. She’s eating well so I’m hoping next time she has her bloods done it will have cleared up.

Update 6th April 2015

Firstly, my family and I would like to say a huge thank you to every single person that has very kindly sent post to our Annabelle and Aimee. It really, really does mean so very much to us all.

Annabelle has been suffering with her eyes and stomach this month. She had an appointment with the consultant ophthalmologist who diagnosed her with anisometropic amblyopia. Her eyesight had deteriorated so she gave us a new stronger prescription and we have to continue with the patching and wearing glasses. She has to go back for a field vision test and for normal regular checks with the optician.

Annabelle had also been getting chronic episodes of diarrhoea and pain whilst very lethargic and fatigued. Both lethargy and fatigue are common residual symptoms of ADEM so she was sent for blood tests which came back showing she’s anaemic and our doctor thinks she may also have either Crohn’s or coeliac disease so she is going to be tested for those.

As always she has been a trooper in coping with her leg pains, general aches and pains, numbness and tingling sensations. She described it as her body was ‘down in the dumps’. She has a physio programme that we do daily and we hope it will soon give some relief.

She’s had a hearing test this month which showed her glue ears had returned. We are to go back in three months and if it’s not improved she will either have grommets fitted or hearing aids.

Medical things/gadgets and anything to do with hospitals are still high on Annabelle’s ‘favourite’ things list and every time we are there she’s always asking what the equipment/machines are for! Very inquisitive, we call her doctor Annabelle at home.

Update 17th January 2015

Happy new year to everyone at Post Pals. Firstly my family and I would like to thank everyone that very kindly sent correspondence over Christmas. Both Annabelle and Aimee received some truly lovely and thoughtful gifts, cards and letters, and believe you me when I say everything generated a smile on those girls faces!

Annabelle’s still suffering with muscle spasms and daily aches and pains, especially in her legs. She’s experiencing numbness and tingling throughout her body which we have been told by her neurologist is her brain attempting to ‘re-wire’ itself. She’s trying very hard to regain her bowl and bladder control but it is very hard for her. She’s getting agitated a lot and seems to struggle to ‘calm down’ and have quiet moments but apparently this is all normal of a brain injury.

She’s been a real trooper with her glasses and has been wearing them all day without fuss. At her recent ophthalmic appointment her eyesight had unfortunately deteriorated so she is now wearing an eyepatch. Although she complies with it, she doesn’t like it and struggles with it so it normally results in tears.

Her consultant requested a hearing test for Annabelle which she failed so she’s now been referred to ENT. Her consultant also discovered she’s got asymmetric enlarged tonsils so an eye is being kept on those too. She still has the Thick and Easy thickener in her drinks but her dietician and those she sees at the feeding clinic are happy with her progress so we are hoping to try and wean her off it soon.

Due to the many appointments and time she spends at hospital she seems to have developed a love for all things medical! One of her nurses recently gave her one of their light pens that’s used to check the eyes and she loves it!! Takes it everywhere! Always playing doctors and nurses and checking ours and her dolly’s ‘eye size’ as she calls it! She loves plasters, bandages, BP monitors, she even asked for a hospital gown the other day! She often goes on Google images and looks at the brain and heart and many a question follows! She told us the other day ‘on Monday she wants to be a brain doctor, Tuesday a teacher, Wednesday Missus Maker, Thursday a nurse, and Friday an operation doctor!’ She enjoys medical documentaries and we’ve started recording 24 hours in A&E for her as she seems to find it fascinating and is forever asking about what happened to her. She wants a case of ‘encephalitis’ to be shown (ADEM would be even better but knowing how rare it is I don’t think we’ll see a case of that!) She’s has gone back to asking ‘am I in life’ again on a daily basis and her consultant is looking into perhaps having some counselling for this.

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03 November 2014

Story written 2014

Alfie was diagnosed with acute lymphoblastic leukaemia (ALL) on 10th February 2014. The genetics of his cells meant that he was put on regimen C which is the strongest form of treatment. Throughout this devastating time he has been a very brave boy and has never complained. He has always fought hard while keeping his ability to amuse everyone he meets with his cheeky personality and constant singing! He is quite simply a superhero! Alfie has always stayed positive with the help of his four sisters, who keep him upbeat with lots of play and fun activities. Plus, even though he has missed a lot of school due to his illness, he has managed a few visits, even just for lunch with his friends to keep up to date what is going on in their lives.

Alfie has responded extremely well to treatment so far and will reach end of treatment on 10/06/2017.

Update 4th January 2017

Alfie has been well over the Christmas period and enjoyed the break from school. He is currently tolerating 125% chemo dose but this does take its toll and he tires quickly.

Again I would like to thank everyone for all the lovely post we have received. Both Alfie and Ruby have been thrilled with all of it, from handmade cards to reindeer revealing magic tricks, to some truly generous gifts. Thank you xx

Update 17th October 2016

Alfie has been in hospital twice this past week with temperature spikes, but only has a cold so has been allowed home. Grace, Ella and Niamh have now been moved on, I wanted to thank you for all the lovely post they have received in the past.

Update 7th July 2016

Alfie has had a few issues this past couple of months with his tummy, due to effects of steroids and also had food poisoning, so was off treatment for a week, but seems to have recovered well.

I just wanted to add an additional thank you for the butterfly garden we received, we had a holiday so only recently got the caterpillars, but we all enjoyed this experience. The whole family got involved and it was lovely to see the butterflies emerge! We released them yesterday on our allotment and Ruby managed to hold one for a few seconds before it flew off.

Update 6th June 2016

Alfie is still doing well apart from a few blips when on steroids!

Update 14th March 2016

Special mention for Alfie’s gift of Lewis Hamilton car and canvas picture, a cushion from Alfie’s cause, the extra post when he was ill – especially the handmade cards and stickers. Also a Star Wars themed parcel from Rachel. Evie’s monthly project parcels for Ruby. And also the Mums parcel for myself – thank you. Alfie has received so many letters and cards and also loved his valentine balloon and card. Alfie seems to have recovered well from his lingering chest infections, so much so that his chemo dose has increased!

Thank you to everyone who has sent post, Alfie and his sisters, love every single thing that they receive and it has helped to put a smile on his face while he has been feeling poorly.

Update 6th January 2016

Alfie got much enjoyment from the toy Advent Calendar, the Guess the Logo game and also decorating the Gingerbread House, the Lego set from Marty Longo, and all the elf parcels, but mainly all the handmade cards and letters that people took time to send. Thank you to everyone who sent something.

Update 5th December 2015

Just wanted to give a special thanks to Evie for Ruby’s monthly project parcel – she was absolutely thrilled with it! Also for Alfie’s as he watched his dinosaur egg hatch with much enthusiasm.

Update 8th November 2015

Alfie is still doing very well, is at school full time and goes to football and dodgeball after school clubs.
Just wanted to mention that we had some really cool Halloween themed post this month, including handmade cards and a fabulous jigsaw, as well as lots of fun activities to do – so thank you to all who send us things.
From Lisa (Alfie’s mum) xx

Update 26th September 2015

Alfie has now started back at school full time and has started plying football in the after school club.

We’d like to say a big thank you to all the people who have sent us post over these few months. We’ve received regular post from Marty Longo and Dottie Dalmatian; a letter from Regan; cards and updates from Hilary and Jem; a WWE card from Karen, Toni and snoopy; a letter from John Dziak from USA with a secret Star Wars message!; postcards for everyone from Michelle; numerous postcards for Grace from Belinda; an Alice card with tea bags for Ella and cards and letters for everyone from Natashja; postcards from Tanya and Essi; birthday cards for Ella and Grace; beautiful handmade cards from Ann; and Ruby also loves her personalised handmade cards and messages from Laura.

Alfie received a fabulous parcel from Wendy with craft items, including glow in the dark solar system and pump rocket. He got a Star Wars pop character which he loves and Hilary and Jem sent him a hand knitted minions hat. Ella received a lovely parcel from Sue Jenkins including butterfly mobile, soap and jewellery. A fabulous parcel was sent from Evie for Ruby with a bag, craft items, some lovely stationery, handmade purse and pencil case, plus her earlier parcel of globes and craft items from Evie. Grace received a lovely butterfly jewellery set and lights from Halima. Ruby had a letter from Maria and Michael and a lovely arts and crafts parcel from Stacey, the artist. The children also received a party pack from Dottie which they all had so much fun with.

Thank you to you all.

Update 24th July 2015

Alfie is doing very well at present and we are hoping he will be going back to school full time in September.

He has joined a cricket club and is also keenly following Hamilton in the Grand Prix!

Thank you for our beautiful paper cuts this month.

Update 10th June 2015

A massive thank you to Katy O’Brine for sending colour in cushions and pens, pillowcase and headbands to the kids, plus a mum book that is paper cut to show a heart design especially for me! Thank you also for the senses gift box from Evie and stickers from Jannine. We received a yuck tin of gruesome things which all the kids loved as there was fake poo! We also had lots of birthday cards for Alfie. Thank you to everybody.

Alfie has now started cricket club after school as tag rugby has finished.

Update 9th May 2015

Alfie is still doing well and has joined tag rugby club after school.

Thank you to Little Rascals nursery for their handmade card and Chryston high school for their cards and letters. Thanks also go to Natashja and Lindsay for the children’s post, to Ann Savage for the beautiful handmade cards, and to Belinda for the updates Grace gets as she loves them. The kids also loved their senses parcels which had some great items including glow sticks, sweets, perfume, books and a fart toy!

Update 10th April 2015

The children received some lovely books this month for the monthly projects theme, including bedtime stories, penguins of Madagascar, lego sticker books and a lego heroes book from Karen and Connor. They also received an xbox 360 game from the Nerd Basement, a box of sweets from Candy Chaos, a brilliant handmade Minecraft creeper from Laura, and some very impressive bath bomb sets which the girls were keen to try out. Alfie also received his personalised Easter egg from Post Pals. We had updates from Belinda and Swedish tradition info from Jenny. We also received letters from students at Park View School in Illinois and our regular cards from Marty Longo and Dottie the Dalmatian. Thank you for all the post that was sent.

Update 23rd March 2015

Thank you for all our post this month and for the personalised Valentine’s cards and their boxes of sunshine, which they all loved receiving. Thanks!

Update 7th February 2015

Our five lovely balloons arrived from Post Pals this month. We also received our Dottie the Dalmatian which the children love! Niamh has had some fluffy socks and stickers, Ella also got some socks, a hot water bottle and dreamcatcher, Grace had some pencils and stickers, Alfie got a blow up toy, and Ruby got a book and some crayon rings – which she was very impressed with! Alfie also loves his chemo duck (which I forgot to mention he got in December!) and he has found his duck very helpful to show his friends where his medicine goes.

Update 24th January 2015

Alfie is still doing well and manages to attend school about three times a week.

The children get so excited when something arrives from Post Pals. It really is humbling that so many people want to send their best wishes. We have received some beautifully handmade Christmas cards, along with lovely letters from Class 108 at Guryong Middle School in Seoul, South Korea. We also had some fantastic letters from students at a high school in Croatia. Finlay Mellor sent Alfie a robot to build and he loved it! Grace also loves her Jacqueline Wilson books. A box of craft from the little crafty bugs company for Christmas which was great. Each of the children also got a parcel – diaries, make up, Lego figures, plus a Minion gun for the bath!

Update 17th December 2014

Alfie is now in the maintenance phase of his treatment, meaning he only has monthly visits to hospital and the rest of his medication is given at home. He appears to be doing well and has managed to attend school a couple of times a week.

We are very impressed with all the cards, letters and messages received so far from Post Pals. There are so many kind people writing to us all as a family as well as individually and it has really cheered us all.

Thank you for the 3D viewer from Kim and Stevie, a green Lego crayon from Toni, Karen and Connor, some lovely letters for Grace with photos from Belinda in Austria, and of course the fantastic balloons from Post Pals! Alfie loved his Batman balloon!

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