Matilda B

26 November 2017

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

Update 24th August 2020

Sorry for the lack of updates, it’s been a very strange year this year so far and what I had hoped to update has not happened yet due to Covid 19 abruptly putting a stop to our plans.

Matilda has had a very stable few months, a few hospital admissions for surgery and routine weekly injections, infusions and bloods but we have mainly tried our best to keep her well and away from hospital as we like many others have been shielding.

We were due to go to the US this spring for major spinal surgery that we have been refused in the UK, however it has had to be postponed due to Covid. We have no idea when this will take place now, it isn’t safe enough yet for us to travel to the US nor it is safe or practical for us to be in the hospital with her for such a long period.

In my last update I briefly explained we were going for assessments abroad to see if they will privately offer her the surgery she desperately needs to improve her prognosis and prolong her life.

Those assessments were very helpful but they also told us things we did not know. As part of the assessments Matilda saw consultants from every speciality and we found out so much more about her.

The biggest shock was when she saw respiratory and pulmonary who did every test under the sun, her lung function is only 41% and her lung volume is less that 50% and she was given a diagnosis of severe restrictive lung disease. This is a great worry not only because her lungs are struggling due to her unique abnormal collapsed spine but the major surgery will affect her lungs badly and the doctors are worried about her initial recovery post surgery and the fact her lungs may not cope well.

The reason Matilda needs this surgery is because her organs are massively squashed and because she doesn’t have a belly ( she is all ribs) her organs push upwards into her chest stopping her lungs growing and working properly instead of being able to grow outwards into a belly.

Thankfully the US hospital said she was a candidate for the surgery and the feel they can improve her quality of life, her prognosis and more importantly give her lungs some room.

Without going into too much detail she will need two major surgeries  to get done what they need to do and we will have to stay in the US for 4-6 months.


This will not be easy for us, but we have no other choice as our case went to an Ethical Panel in England and the surgery was refused based on no experience here and the surgery deemed experimental with a high mortality rate given all her co- morbidities.

Thankfully in the US Children’s hospital they have greater experience of this time of abnormality and much more experience, they are confident the can help her and most importantly they want to help her and not just leave her to deteriorate and impose palliative care which is what they wanted.


As we are all trying to get back to some normality whilst Covid is still around we have been told by Matilda’s consultants that given her respiratory problems and everything else we should continue to shield as a family for the foreseeable future and that means the children not going to school. 

We have weighed everything up and given how vulnerable she is and the impending surgery we cannot risk her getting very ill with Covid so we are going to home school them all for now and see how things go with regards to cases of Covid and what autumn/ winter brings. We live in a restricted area and we have higher cases that most areas so right now I am happy to home school the kids and I feel that is best for my family.


The kids loved home schooling before the summer holidays, they have progressed so much and don’t seem bothered at all that they are not going back just yet so I’m happier about that as it would be harder for me to accept if they wanted to go back and were not coping emotionally.

Update 4th October 2019

I apologise for the lack of updates on Matilda, but things have been very tough for us all as a family the last 6 months, Matilda health is a cause for concern as she has had a couple of diagnosis’s added into the mix which are proving problematic to treat/ resolve.

After 2 years of suffering from severe nose and gum bleeds and lots of bruises she has been finally diagnosed with 2 bleeding disorders that are a concern and we are currently awaiting treatment plans for these now she has been referred to a bleeding disorder specialist.

Whilst I cannot go into much detail at present Matilda has been refused spinal surgery in the UK which would prolonged her life and stop her organs failing further due to the massive risk to her life during and after the surgery and the particular surgery she needs deemed experimental in England.

We are therefore going abroad in the next couple of weeks for a second opinion and an assessment from 3 other hospitals, we hope and pray one of these hospitals – who have all performed the surgery she needs many times – will accept Matilda for the surgery and save her life.

It’s been a horrendously stressful few months for us not knowing if Matilda will or will not get the surgery and whether the poor prognosis and life expectancy we have been told will become a reality or not…we are still in limbo I am afraid.

Whilst Matilda is completely unaware of the Ethical issues relating to all this, she is anxious as all this talk of surgery and not knowing where she will have it, overhearing Drs talking has all taken its toll on her and she is very sad and down in the dumps lately which is not like her and however hard we try to protect her from overhearing things, it’s inevitable someone will ask or mention something when she is around.

We have made the decision that I will take Matilda abroad for the assessments and Andy will stay home with the other children, try to stick to their normal routine and keep them in school. We felt this would be best for them at this time and they all seem to understand and are happy to stay home as they don’t want to be stuck in hospitals daily.

That doesn’t mean they won’t miss us terribly and maybe be a little sad, so if anyone wants to send Oliver, Layla and Zachary a card, letter or picture from mid October to early November they would really appreciate it and so would I.

The kids love waiting for the postman to see if he brings post and they haven’t had much lately apart from their amazing monthly parcels from their lovely parcel senders.

I think it will take their mind of things receiving some happy post.

In and amongst all this little Zachary has been diagnosed with Epilepsy which has shocked us. He had his first seizure in Feb this year and has had 5 since each requiring hospitalisation. 

I apologise for not posting on Post-pals FB page but I have come off all social media for a while whilst we are in turmoil over all this with Matilda and I am trying to keep it private and avoid all the questions I cannot answer etc, I do however want to say a huge thank you to each and every one of you who have sent the children post and to the amazing monthly senders and to Postpals for the gifts, flowers and cards you have sent.

Thank you Post Pals for all your support

Update 14th April 2019

Sorry it’s been a while since our last update on Matilda, things have been pretty hectic and stressful for us all the last 6 months.

As some of you may know Matilda was due to have spinal surgery last December, but I unfortunately broke my hand badly and had to have surgery myself the day before we were due to travel to Oxford for the surgery, so we had to cancel at the last minute.

There has since been many meetings with the professionals and various teams who will be involved in her care in Oxford and as a result of these meeting major concerns were raised about Matilda’s underlying medical conditions and how they make the surgery even more risky.

The proposed surgery will be carried out over two days under the same general anaesthetic – on day one the neurosurgeon is to operate on Matilda’s brain to put a pressure monitor inside her brain and the plastic surgeons will open her back. The neurosurgeons will then spend the rest of the day detethering her spinal cord and she will then be taken to ICU and kept under the same anaesthetic overnight. Day 2 will be the spinal surgeon removing 4 abnormal vertebrae then using rods, screws and plates they will build her collapsed spine back up and put rods in.

This will be to give Matilda the space she needs from her waist to pelvis as currently her spine is collapsed and all her organs are crushed and not working properly.

The main concern is her lungs are only 50% the size they should be because they currently have no room to grow. If they do not have room soon they will reach a point where they stop growing and they will be unable to sustain her oxygenation as she gets older.

We were told if we don’t go for the surgery the chance of loosing her is high, if we do have the surgery there is also a risk we could loose her – but as this is so unique they cannot give us any statistics.

It’s more complicated because Matilda’s organs and blood vessels are not where they should be. They are squashed, and her spinal cord is very close to the surface of her back, stuck in scar tissue. The ICU team are concerned because she has clotting problems and because she has no reserve – she cannot control her blood sugars and the risk of a severe stress response during surgery could put her in real danger.

Having said all this we feel like we are damned if we do and damned if we don’t and if this surgery is successful it will be life changing for Matilda and will change her life for the better and give her an excellent prognosis and life expectancy,

We had a big meeting with the neurosurgeons, plastics, spinal surgeons, anaesthetists and ICU consultants last week and they will now have another meeting and decide if with all the risks highlighted they meet the ethical guidelines for doing the surgery.

Aside from all this, Matilda has been very well the last few months, we have had a few quick hospital admissions for Influenza A, temperatures or infusions but this has definitely been her best winter.

Layla and Matilda have just started Brownies which is fantastic and they love it. I have to stay with Matilda but she isn’t bothered and is just so happy to be with the Brownies having lots of fun.

Little brother Zachary, on the other hand, has had his first experience of hospitals, doctors and illness as 2 months ago he had a bad seizure out of the blue one day that scared us all to death. He ended up in hospital for the weekend and has since had another one at home and one at school.

This is a great concern for us as he is fit and well and never ill. We have seen a neurologist who has studied the videos I took of the episodes and read the hospital notes and she thinks he has a form of epilepsy called Panayiotopoulos Syndrome ( it’s so much easier to spell that pronounce, ha ha) 

He has had an EEG and was put to sleep last week for an MRI scan. He has been so brave and just taken it all in his stride. We just now need to wait for the reports.

Oliver is doing well at school. He has also had a few weeks of being unsettled (Oliver has Autism), he isn’t sleeping very well and seems to have developed some anxiety issues which are completely new and we do not know what’s triggered it. 

I just want to say a massive thank you to everyone who has sent the kids letters, postcards, pictures, gifts and parcels, every one is greatly received and the kids love to receive post from Post Pals.

Update 9th September 2018

I can believe we have been a member of Post Pals for almost 9 months now! We would like to thank everyone who has sent Matilda and her siblings cards, letters, postcards, gifts and big parcels. You have all made my children very happy and put massive smiles on their faces. So much so that they now wait daily for the postman to come down the drive to eagerly see if he has any mail for anyone!

It’s been a very touch year for us as we have had to experience many firsts without our beloved Daisy….Christmas, New Year, Easter, her 21st birthday and the anniversary on her death in August. Again I would like to thank Post Pals for the love and support we have had and some beautiful messages and cards sent to us. Matilda has been relatively well this year, we have still had a few hospital admissions, mainly for operations to put in new central lines or tubes but nothing prolonged or serious which is really good news. We continue to go to hospital weekly for blood tests and for Vitamin K and A infusions but it’s only a few hours at a time so we can deal with this. We were invited on Post Pals trip to Chessington in April…it was amazing! We have never been before and we were pleasantly surprised how much there was to do there and what a brilliant adventure park it is, there was so much to do. It was nice to meet so many lovely families and meet Vikki and Ally, more friendships formed. The kids …and us had a great time, the kids loved the themed bedrooms and all the animals. Matilda’s highlight was the Giraffe feeding and the ice cream competition.

As summer comes to a close the kids are back at school … little Zachary started reception class and Matilda continues her home education with me. One of our biggest achievements to date happened this week…..Matilda won a Wellchild Inspirational child award. We went to the awards evening and met HRH the Duke and Duchess of Sussex (Prince Harry and Meghan) Matilda was all over the media and online (which she loved) and Prince Harry actually presented her award (how lucky is Matilda) I am so proud of Matilda, she goes through so much but never complains, always has a smile on her face and just takes each day as it comes.

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