Our Pal - Safaa M

**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.