Our son Sam is 4 years old and at 12 months old he had the right side of his brain disconnected and partially removed (Hemispherotomy) at Great Ormond Street Hospital due to uncontrolled seizures resulting from a very rare brain condition called Sturge Weber Syndrome. We are hoping to raise money towards the possibility of additional surgery and therapy for Sam's ongoing needs.
Sam has severe left-sided hemiplegia, a type of cerebral palsy that affects one side of the body and his vision. Sam is doing so well, he takes most things in his stride and tries his best at everything! Sadly a lot of the things that would benefit him greatly are not available on the NHS- so much so that we are hoping to petition the government to review paediatric neurology care at a local level. We have self funded a number of things already, we took him to get a Bionic Sleeve in America, we have extensively adapted our home and garden to ensure he is safe, he has had a custom made bed, accessible equipment, specialist trike- we are constantly adapting anything we can to help improve his quality of life. However, the future prognosis of severe cerebral palsy is that with every growth spurt Sam has, his bones lengthen but his muscles on the affected side do not, leading to increased spasticity, tightness, deformity and pain. At the moment, Sam can be awake nearly all night due to discomfort in his legs and muscles, just the other day he refused to walk at all due to pain and this is becoming more regular. This will sadly only worsen as he grows and the future implications aren’t good. The likelihood of him needing surgery on his leg in the future to allow him to continue to walk and heavy medication to alleviate his pain is high, his team are already discussing these options.
SDR surgery (Selective Dorsal Rhizotomy) is done in the US at St Louis Children’s Hospital, by Dr Parks. He is only surgeon who has done the operation on only a couple of children who have had a Hemispherotomy (so far we have only met one patient). However, he regularly operates on children who have hemiplegia and the results are astonishing. Not only do they no longer have any spasticity and walk better, more importantly they are not in pain and their long term prognosis is much improved. If Sam doesn’t have this surgery at a young age, by the time he is an adult he could be in a wheelchair full time.
This procedure and many other therapies are not available on the NHS for hemiplegia patients, so we have to fund this privately. Sam’s team are discussing the possibility of this being done privately here or it would be in the US. Because there is only one patient that we know of- it’s a tough fight to get it! He will need long term intensive physio privately afterwards, but this surgery and many other therapies could be life changing for Sam and give him the future he deserves.
Thank you for reading our story, Sam is our little miracle ⭐️
- Jordan Fendick
- Julian Breen
Organizer and beneficiary
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