Abit of back ground
Kieran was born premature at 26 weeks , a result of this caused him to have multiple bleeds on his braining causing cerebal palsy. Over the years I have worked so hard with Kieran doing physio to stop his muscles going into painfull cramps and spasms and to keep his legs moving to help him walk. Hes had sergical intervention such as tendon release surgery on 3 occasions to help straighten his legs to enable him to get more movement by stretching the muscle. He's had botox injections to loosen his calf muscles and hamstrings and his legs put in a pot to stretch the muscles to be able to maximise his range of movement once the pot came off.
Kieran would always try to walk with a walking frame however this was difficult and painfull as his legs turn inwards. The desicion was made to have a de-rotational osteotomy to break his leg and pin it back together in the correct place to stop his leg turning in . All the cramps, high muscle tone, leg spasms and the leg not sitting in the socket of the hip gives Kieran a great deal of pain , just smallest of tasks can be agony for him this means he has to have medication every day to try and stay on top of pain aswell as medication to try and help with the crapms. The medication is trial and error and has been since he was a baby, the medication can have nasty side effects. Kieran wants to be pain free, and not on medication all his life and we dont know if long term medication will effect his liver or kidney's.
Kieran tries very hard to not let his disability stop him from doing anything and is a typical cheeky 16 year old. He's thinking about his future, what job he would like, what he will do in his free time, 1 day he wants to get married and be a dad.
Last week I took Kieran to an appointment at the Q.M.C Nottingham where we were given news that neither of us were expecting. Just recently over the past few weeks Kierans mobility has really suffered and the pain has got worse, i foynd myself having to carry him and pick him up of the floor as he would just fall over, cleay something wasnt right....
The sad reality is Kieran's loosing his mobility and without further sergical intervention he will loose all motion from the waist down and be in a wheelchair permenantly within the next 5 years, meaning everything he's worked so hard doing becomes pointless. 16 years of learning him how to try and crawl, climb, stand and walk ( in his own way) just gone!! To say we are both devastated is a understatement. I drempt of him living a 'normal life' and because he had made such progress I believed it to be possible. At no point did anyone ever say Kieran could end up this way .
Kieran has been offered S.D.R surgery on his spinal cord where the nerves that are effected by the cerebal palsy are cut, once cut kieran will never experience another leg cramp or spasm or suffer with high muscle tone again. This means Kieran could move as he would have more range of movement he could do physio and be 100% pain free and off medication forever. This also means if he could sort of walk before the procedure his walking would improve afterwards meaning he doesn't spend his life confined to a wheelchair just as his life is beginning.
The treatment would normally be done in America costing £50,000 , gradually more uk surgeons have trained in this field and in August the N.H.S decided to start to fund this treatment but sadly at 16 Kieran is to old, the cut off is 10 years.
There's only 5 hospitas in the uk that do the surgery and with Q.M.C being the closest to us and cheapest as they only charge for the doctor and theatre time and do not charge for things like nursing time and meals ect like other hospitals do. The professor said he would do the procedure but time is of the essence as Kieran's mobility is declining. After a long chat with Kieran he has decided he wants to go ahead with this procedure infact it could be a miracle for him and give him a new lease of life a life better than what id ever thought possible.
DonationsSee top donations
- Mark Griffiths
- Hazel French
- Liam French
- Karen Worth
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more