A Devon farming family have launched a £60,000 appeal to try and get their son a life-changing operation that will ensure he can continue to walk.
Eight-year-old Eddie Weston has cerebral palsy and currently walks with a walking frame and tripod sticks – but without an operation and specialist physiotherapy he could lose even this ability.
His parents Lowri and Neil Weston fear his mobility could become much worse if he had to wait for the operation on the NHS, especially with the coronavirus pandemic and have launched an online JustGiving appeal called Eddie’s Every Step Counts, which has raised £13,000 of the £60,000 needed.
The farming family from Bampton are working with the Tree of Hope charity to try and raise the money for a selective dorsal rhizotomy (SDR) operation, intensive rehabilitation physiotherapy (at least two years’ worth is needed) and rehabilitation equipment needed for Eddie to help him walk.
Both Eddie and his sister Violet, aged four, attend Bampton Church of England Primary School and he loves school, as well as his time in Bampton Beavers and Cubs.
He and Violet did a sponsored trike and bike ride on the Tarka Trail, sponsored by local and UK businesses and individuals too. Eddie smashed his goal of three miles to do 4.4 miles.
His condition means his muscles tighten and hinder his movement, so without the operation he is likely to need a wheelchair as he gets older and lose any ability to walk, which mum Lowri says he has struggled incredibly hard for.
In his words, she said, ‘When I walk with my feet, I am free’.
Lowri added: “Eddie has always had to work extra hard to achieve in life and has needed daily physiotherapy since his cerebral palsy diagnosis as a baby.
“He has put in so much work to achieve the ability to walk with his walking frame and his tripod sticks and after years of physiotherapy, was able to take his very first independent step just before his eighth birthday.”
The family think the earliest he might have the SDR operation on the NHS is in the winter of 2021, which they fear will be too late to help, as his condition declines.
The SDR will also help to loosen muscles in his arms and hands, making writing less painful for him, as well as help stop premature ageing of joints and possibly reduce the need for future surgeries.
People are also invited to take part in Eddie Weston’s Virtual 5K Challenge by running, walking, cycling or moving in their own way - visit the Eddie’s Every Step Counts Facebook page.
If you would like to donate, go to www.justgiving.com/fundraising/Eddie-WestonEveryStepCounts .