Jace’s SDR Journey
Jace is a very fun, loving and smart 9-year-old. He was born with Cerebral Palsy, mainly affecting his legs.
At 18 months old we were told Jace would never walk, stand or talk. He defied the doctors and can certainly talk! However, he was not able to stand or walk without the aid of a Kaye walker.
We started fundraising for Just4Children so that Jace could have an operation called Selective Dorsal Rhizotomy. This operation involves cutting nerves in the lower spine to reduce spasticity in the body, the spasticity being the barrier which prevents Jace from standing or walking unaided. About a year and a half into our fundraising journey, the NHS announced they would start funding the SDR operation – fantastic news! However, there is a tight ‘criteria’ which the child needs to meet to be eligible for it. Jace thankfully met this criteria and had his operation on December 27th 2019.
Although the NHS has paid for the operation we still need to raise as much as we can to pay for Jace’s aftercare. We need to pay for private physiotherapy as the physio the NHS provides is just not enough to make the operation worthwhile.
The operation is the ‘easy’ part, the aftercare is the most vital as this is what will enable Jace to be able to stand and walk unaided. Jace will probably need ligament lengthening as he grows to stretch his leg muscles, requiring further physiotherapy after this operation as well.
Jace currently has 1 private physiotherapy session a week, to strengthen his muscles, along with 1:1 swimming, horse riding and lots of walking. He is now able to take around 30 unaided steps and he is progressing to walking with just 1 stick! We need to keep this physiotherapy going for as long as we possibly can, to allow Jace to get strong enough and more balance so he can walk unaided for longer and to prevent his muscles going weak again – we do not want to go backwards as he has worked extremely hard to get where he is!
We are trying to raise £40,000 for Just4Children to be able to pay for Jace to have the very much needed intensive physiotherapy for as many years as possible. The longer we can keep physiotherapy going, the more Jace will benefit.
All fundraised money will be used to cover all aftercare costs as well as any other operational related costs that may arise from the SDR operation or any future operations.
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We are so very grateful for all donations and support.
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