Ryley get the help he desperately needs and deserves

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Ryley get the help he desperately needs and deserves

Ryley get the help he desperately needs and deserves

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Ryley is a 9 year old football mad boy from Borehamwood. He was born 3 months early and unresponsive but after being resuscitated he started his biggest fight. He was diagnosed with Congenital Heart Disease, he had an operation before his due date and then after months of not reaching milestones he was diagnosed with Periventricular Luekomalacia, Dystonia and Spastic Diplegia Cerebral Palsy.

This was a massive shock for us as a family but we knew we could not let this stop our little beautiful boy being the best he could be. Ryley is under Great Ormond Street Movement Disorder Team and we were told he would never be able to walk, talk or feed himself. We asked about a procedure which I had researched online but unfortunately due to criteria he was rejected by the NHS. We fundraised to get him to America for a life changing operation called SDR (Spinal Dorsal Rhizotomy) and PERCS (tendon lengthening). He then spent a month in rehab there before we flew home and that is where the battle really began.

Back home Ryley needs daily physio to stop his muscles going tight again and to stop pain. He has 2 private physio sessions a week and needs bespoke orthotic splints for his legs (new pair every year) and wears night splints. He has intensive therapy abroad all needing to be paid for privately as well as the specialist equipment needed. At the age of 8 he has defied the specialists by being able to do things they said he would never be able to do and now he is taking very important small steps which is unbelievable.

Unfortunately, the NHS is very stretched and therefore Ryley gets minimal help with regards to OT and no physio from them now so we have to pay privately for this as well as intensive physio whether that be here or abroad, privately funded orthotics and other extremely important equipment for Ryley to use to make him as strong as possible to try and make his challenges that little bit easier so fundraising is vital.

We really really need your help. All of his previous fundraising has run out and we need to continue his private physio, OT, orthotics, intensives for the long term so he can achieve as much as possible. If you met Ryley you would see how hard he works and even on bad days which he has an awful lot of, falling, legs giving way etc he still cracks a smile. Our boy did not ask for this to happen to him. Cerebral Palsy is a brain injury and it plays havoc with your life. Anything you could do to help Tree of Hope for Ryley we would be eternally grateful.

Ryley will always have Congenital Heart Disease, Dystonia & more importantly Cerebral Palsy but it will not define him

Thank you to every single person that has helped so far with Ryleys fundraising, it’s a never ending battle with having to pay for everything privately due to the lack of care from local services. Thank you again, us and especially Ryley are forever grateful

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Sarah Keys
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