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 Arnie was born with genetic condition Noonan syndrome and Tumour in his pelvis Neuroblastoma and had to undergo surgeries for biopsy central line and have chemotherapy as a newborn baby. Arnie manage to fight neuroblastoma but still has many complex medical needs. Arnie has faced multi surgeries the last 4.5 years for many different reasons brain surgeries for vp shunt, kidney stones with stents being fitted nephrostomy bag for a while. Arnie spent a lot of his first year of life in hospital and continues for constant appointments and admissions over the last 4.5 years. Arnie has a serve platelet condition thrombocytopenia which means Arnies platelets are around 8-10 so Arnies risk of bleeding and bruising is very high and his quality of life what he can do is very limited. Arnie recently had bone marrow testing which has confirmed Arnie will develop leukaemia so his only chance to limit the risk of this is for Arnie to have a Bone Marrow transplant in Great Ormand Street. Which is due to be happening in October, Arnies older sister is going to be his donor as it’s 100% match and best chance for the bone marrow transplant to be a success. This is going to be extremely high risk for Arnie to have Bone marrow transplant, He needs lots of test investigations first he will be having more surgery for a stomach peg, central line another bone marrow test, heart scan , kidney function testing. Arnie will need intense chemotherapy again before has the bone marrow transplant meaning Arnie is going to need to self isolate before and will spend a long time in Great Ormand Street which he won’t be able to see his sister as he will have no immune system for a long time after having intense chemotherapy. The side effects of chemotherapy on Arnies body are going to be extremely tough. He is a very small 4.5 year old meaning everything hits harder for him. His dad Ben is self employed and will need to take a lot of time off work to be there with Chanel, Nellie and Arnie. They arent sure if will have accommodation provided or will have to fund this there self. There is a high chance Arnie will be in Great Ormand street for Christmas which means the family will be separate and both siblings not together. This is going to be Arnies biggest fight and a very challenging time for all of the family. They have to do this as Arnie’s best chance at life but it’s going to be such a big fight and very tough all being apart and keeping strong.
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 As their friends and family, we feel that now is the time for us to step in and help take away some of the financial worry, allowing them to focus on what truly matters being together as a family and being there for their baby boy.
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 We know that no amount of money can make this situation easier, but every donation, no matter how big or small, will make a real difference. It will help with travel, accommodation, everyday living costs and the unexpected expenses that come with having to spend so much time away from home.
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 If you are unable to donate, simply sharing this page would mean so much to the family.
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 Thank you from the bottom of our hearts for your kindness, support and generosity during what is an incredibly painful and uncertain time for this family. ❤️
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Alison Burns

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