Go Grace Go: Peterborough parents launch new appeal to try and hit daughter’s fundraising target for life-changing surgery

The family of a Peterborough child who needs specialist surgery to help combat a rare degenerative disease has launched a new appeal to help them reach their fundraising target.

Jo and Carl Bucknell-Smith, parents of nine-year-old Grace, are appealing for fitness organisations and active individuals to get involved with the ‘Move Mountains’ fitness challenge this February.

Grace’s mum Jo explained:“We’re asking for any sports venue or fitness club to get involved and do some kind of charity or sponsored event to raise money that could be put toward ‘Go Grace Go’.”

Jo said the appeal is aimed at anyone and everyone: dance clubs, park runs, football teams, gyms and boxing clubs, and that fundraising events can be anything from danceathons and challenges to fancy dress gatherings and competitions.

“It doesn’t have to be massive,” Jo pleaded: “it could just be something small because it all adds up.”

“Anything to raise funds would just be amazing for us.”

Nine-year-old Grace has two rare and incurable neurodegenerative progressive diseases: KIF1a and Hereditary Spastic Paraplegia (HSP).

At present, Grace relies on a Kaye frame and wheelchair to assist with her mobility.

“She struggles to walk let alone dance or climb or crouch jump or hop,” Jo explained: “ “There’s so much that she’s missing out on as a nine-year-old child.”

Medical experts have told Grace’s family that surgery is available which will improve the young girl’s mobility.

“The neuro doctor at Alder Hey is hopeful that having the private SDR (Selective Dorsal Rhizotomy) operation will take away spasticity, pain, and spasms,” she said.

“Without this [surgery] we have been told the body will continue to degenerate and make contractures, deformities and the future will be painful with difficulties moving around," Jo said, adding: “she will depend on her wheelchair.”

Sadly, the specialist surgery is not available on the NHS, and that is why Jo and husband Carl have been desperately trying to fundraise the £22k needed to cover the cost of the operation.

Unbelievably, Carl and Jo – aided by a groundswell of goodwill and support – have managed to to raise close to £19,000 in the four months since Alder Hey Hospital confirmed it would perform the surgery.

“I can’t believe it, “Jo reflected: “It was October we started!”

“We’re so, so close,” she said: “We don’t need that much more to get her booked in for the surgery!”

Grace’s parents say they have been “astounded” by the support they have already received.

“We’re so lucky that people have been so keen to help us,” Jo said.

Jo believes that using sporting/physical challenges to help the family reach their fundraising target is “really apt”:

“We’re kind of letting Grace step into their shoes - to be mobile and physical which is basically what she can’t do at the moment.”

Any organisation or individual that would like to help Go Grace Go by signing up for the ‘Move Mountains’ fitness challenge can find out more by visiting the family’s Go Grace Go Facebook page or by emailing Jo directly at [email protected].