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Nathaniel's Challenge

Thanks for taking the time to visit my JustGiving page.

We are raising money for our son Nathaniel to have an operation called Selective Dorsal Rhizotomy (SDR).  SDR is a neurosurgical operation for children with Cerebral Palsy, to cut some of the nerves in the spine that are causing most spasticity in the legs.

Nathaniel and his twin David were born in May 2007 at 32 weeks, a fairly tiny pair of scraps.  After 18 months and some concerns that Nathaniel wasn't meeting his developmental milestones, he was diagnosed with Spastic Diplegic Cerebral Palsy.  This means that his ability to get around has been affected by tight muscles and mixed signals from the brain.  He has nevertheless worked extremely hard and achieved massive progress.  He learned to sit up at around 18 months, crawl at around 2 years, took his first steps with a walking frame at around 3 years, and can now walk unaided for short distances - across the school playground for example.  He works hard at his stretches and physio every day at home and school to maintain and improve his abilities, his attitude is just fabulous and makes us so proud. Nathaniel is a happy, funny, sweet and genuinely lovely little boy, who needs a little help.

We are incredibly positive about Nathaniel's future.  But there are realities.  The spasticity in his legs will cause deformities over time that will limit his mobility in the future, he is likely to get more pain as he grows, and the prognosis for children with his level of CP is that they will become more dependant on a wheelchair to get around as they go into teenage years.  The SDR operation has the potential to stop this by taking away the spasticity that holds him back. There are still a great many things he sees other children doing easily that aren't possible for him, and many of the every day activities we take for granted are such hard work for him.  Other children have who have had SDR describe their legs going from feeling like logs to feeling like twigs, and we want this for Nathaniel.  Having waited nearly 2 years for NHS funding, with still no date on the horizon for funding to begin, we feel we need to push on and have decided to self fund. The projected cost is £15 to £16 k and we are just waiting for a date at Leeds General Infirmary.

Thank you for reading our story and we are so very grateful for any support you are able to give.

Money given to Tree of Hope through this page will be ringfenced for Nathaniel.  The funds raised will go to the general funds of Tree of Hope to assist other sick children should we exceed the target amount or if we do not receive enough funds, or if they cannot be used for any other reason.

 

 

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