♥️ We Fight For Noah ♥️

For quite a while now we have been pretty worried about Noah (our 6 year old). He was always pale, got regular infections (like, twice a month), was always tired, always had pains in his legs.. the list goes on. For about a year the GP fobbed us off even when we specifically asked for a blood test and pushed us away, saying ‘he’s fine, he’s a kid, they get sick all the time. He doesn’t need a blood test’. We were furious. We had just started getting his school involved to help us challenge the GP on his need for a blood test but we didn’t get that far…

June 15th he woke up with a temperature of 39.9C (104F) and a rash all over his body. We called the GP who said she was worried about meningitis and to take him to A+E immediately. It wasn’t meningitis.

After 7 hours of doctors and nurses literally swarming around him in a panic, putting cannulas in his arms, taking bloods and putting him on a drip, they pulled us aside, told us his blood results weren’t normal at all, and gave us an initial diagnosis of Leukaemia. Little did we know at the time though, it wasn’t Leukaemia either.

The following day, after a full night of X-Rays, Organ scans, a blood transfusion and a platelet transfusion we were told his bloods had been sent to Great Ormond Street Hospital for Children (GOSH) and they found no cancer cells in his blood. He then stayed in hospital for IV antibiotics and regular monitoring but we still had no real idea what exactly was wrong with him.

A week after first entering hospital we were able to leave but he was released and placed under the care of GOSH. We had a consultation with a Doctor who asked for more blood tests, organ scans, heart scans, skin biopsy and a bone marrow biopsy to be done (among many other tests) and the process began.

Over the next few weeks he had all the tests and scans, multiple transfusions, and has also had a Hickman Line inserted directly into his chest and into his heart so that bloods can be taken and given without the need for any needles (cannulating him has been traumatic for him and everyone else).

To cut a very long story as short as possible, we obtained some answers quite recently. Noah has an extremely rare disorder called Fanconi Anaemia (FA). In Lehman’s terms, a failure of the bone marrow caused by genetic condition. It only affects around 2 kids per million.
His bone marrow doesn’t work as it should and isn’t able to produce the red cells, white cells and platelets it needs to keep his body going. The rash he had wasn’t a rash at all. They were tiny pin prick bleeds under his skin because his body didn’t have the platelets it needed to keep his blood in his body anymore. He was frightfully pale because he had half of the minimum amount of Haemoglobin (red cells) needed to get oxygen around his body efficiently. His neutrophils were 0.5 which means he is Neutropenic and is at a very high risk of bacterial infections. The condition also means he is highly susceptible to multiple cancers and will have to be regularly checked to ensure his health doesn’t deteriorate further. It’s extremely unlikely he will ever be able to have children and his life expectancy is limited. He will also very likely need chemotherapy and a bone marrow transplant as the months go on, which they will test his older brother Oliver to see if he is a match for bone marrow as a sibling match gives the best chance of success.

We have a long road ahead of us here and the amount of money we have already spent on train tickets, car parks, petrol, medical supplies and everything else amidst a cost of living crisis has pushed us to bankruptcy in a matter of weeks.
We want to fund raise the fuck out of everything where we can. Not only for us and Noah, but to raise awareness and change the system, because we’ve realised that he’s been let down since birth. Doctors should have known years ago and referred him straight after he was born. That isn’t my opinion. We have been told this by a top consultant at GOSH.
The GP said to Steph ‘he doesn’t need a blood test!’ in a stern and undermining voice when he was presenting 8 of the main symptoms of cancer.
We’re disgusted and furious and no one should have to experience the lack of care and attention we dealt with before we were referred to GOSH.

I can’t explain to you all how difficult it is for me to ask for help like this but if any of you can, in any way at all, it’ll help more than I can say. It’ll help with train tickets, car parks, hospital food, petrol, medical supplies and a million other things that we are going to have to do and deal with together for quite a long time, and then any surplus we may be left with I will find families and deserving staff members and help them too. This isn’t only about us and Noah. We will bring a sense of purpose to this. We will start a movement.
The teams of people we are already acquainted with at GOSH have been phenomenal and have made the hardest days of our lives so far ever so slightly easier.

We genuinely don’t know exactly what the future holds, but for Noah’s legacy we will work together and raise both money and awareness. We will make the system better. We will look after and support others in similar positions, and we will honour the people who dedicate their lives to taking super sick kids under their wing and bringing hope to an otherwise dark and devastating situation.

So if you can help, whether it’s financially or emotionally, brainstorming fundraising ideas or helping to run an event, shave your head, beard, balls… we don’t care. You don’t need to say anything and we may not immediately get back to everyone when you contact us, but action and support is what we need right now.

And last but not least, here are the people we are doing it for.
For Noahs consultants. Jack, Ahmed and Olivia.
His haematology team. Izzy, Abi, Rochelle, Lisa and Sophie.
His nurses on Safari Ward. Josh, Toby, Claire, Nicole (and many others).
The nurses that looked after him on Butterfly Ward after his Hickman Line insertion. May and Husna.
His anaesthetist Louise and his Surgeon Katie.
The incredible Play Specialists Jenny and Claire who, without their training and kind hearts, would have made all of his procedures so much more traumatic for him.
Any families out there, present or future, who are dealing with the same or a similar diagnosis whether it’s Aplastic Anaemia, Fanconi Anaemia, Leukaemia etc. We will stand with you.

And finally, for our little Noah.
The most resilient superhero we have ever known ❤️ For you we will bend until we break.