‘Go Grace Go’: Peterborough family’s fundraising campaign to get life-changing surgery for daughter receives ‘incredible’ contribution from Fletton pub

The mother of a Peterborough child who needs surgery to help combat a rare degenerative disease has thanked a Fletton micropub for its “incredible support.”

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

Grace’s mum, Jo Bucknell-Smith, was thrilled to receive the £1,500 raised by David Williams, co-owner of the Wonky Donkey on Fletton High Street.

“We cannot thank him enough,” she said: “Dave has been an incredible support to us with our ‘Go Grace Go’ mission.”

KIF1a is so rare that there are thought to be only around 300 cases worldwide.

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

In addition, the youngster and her family also have to deal with HSP (Henoch-Schönlein purpura), autism, extreme sensory overload, learning disabilities, precocious puberty, seizures, and behavioural issues.

Medical experts have told Jo that surgery is available which will give Grace a better outlook.

“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 she will depend on her wheelchair.”

Unfortunately, the surgery required is so highly specialised that it is only available privately.

Grace’s family and friends set up the ‘Go Grace Go’ campaign – a JustGiving page and Facebook account – to help them raise the £22,000 needed to pay for it.

Thanks to the kindness of strangers and the generosity of people like David and his pub team, the campaign has raised over £11,500 in just ten weeks.

The industrious crew at the Wonky Donkey staged a host of different events to help raise funds for ‘Go Grace Go’. Darts tournaments, Christmas raffles, auctions, and quiz nights were just a few of the occasions which got people reaching into their wallets.

David, who is a father himself, said he felt moved to do something for “local girl” Grace.

“Jo got in touch with me directly,” he explained, “ and I think she was quite surprised by how keen I was to help out.”

“I’ve got three kids and I’d do anything I can to make their lives a bit easier.”

Not content to rest on their laurels, David and the gang have already got more ‘Go Grace Go’ fundraising endeavours lined up, with a Valentine's raffle and a fancy dress pub crawl already pencilled in for the coming months .

“If you can do it, then do it,” he said modestly.

Jo is confident that the fundraising will be entirely worthwhile, and that the operation it will eventually pay for will change her daughter’s life significantly:

“Grace will be able to walk without relying on her Kaye frame and wheelchair so much,” she said, “enabling her to work on building up her muscles to give the best chance of mobility later on.”

Anyone who would like to contribute to the family’s campaign can make a donation at https://www.justgiving.com/campaign/gogracego