A devoted dad, who conquered an emotional 500-mile fundraising tandem bike ride in memory of his late daughter, has been praised by none other than the Prime Minister.
Duncan Brownnutt, from Cookridge, joined family friend Rod Wark on the mammoth ride which raised £13,000 for the Batten Disease Family Association (BDFA) which supports families affected by the incurable condition and funds research.
The 40-year-old dad’s two children Ellie Mae, six, and Caleb, five, were both diagnosed with Late Infantile Batten Disease in 2013. The rare degenerative illness starts at the age of three and sees children lose their mobility, speech and eyesight.
Prime Minister David Cameron has paid tribute to Duncan and Rod through his #PointsofLight award, which recognises outstanding individuals, following the ride that they completed just three months after Ellie Mae passed away.
Duncan explained that the award came as a welcome surprise and hopes the fact that Mr Cameron tweeted his praise of the pair to his four million Twitter followers will generate more awareness and funds for the BDFA.
“It’s a lovely thing to get and obviously if it continues raising awareness that’s great,” he said. “I was stunned to get a call from the Prime Minister’s office, and it’s a thrill to be recognised.”
Rod, 56, added: “My hope and prayer is that our sponsored cycle to the Norwegian Arctic Circle will in some small way improve the prospects of a future cure for this terminal condition.”
The ‘Cycle to the Circle’ challenge saw Duncan and Rod ride from Roros in Norway, where the first case of Batten Disease was reported, to the Arctic Circle Centre.
Praising the five-day cycling feat, Mr Cameron said: “I know this is a cause very close to their hearts, and I am delighted to be able to recognise their fundraising.”
Duncan is taking a break from fundraising to spend more time with Caleb, who is losing his motor skills and now uses a wheelchair. The family has even taken Caleb to his beloved Euro Disney twice in recent months.
“I don’t want to risk being away from him for too long,” Duncan added. “He’s lost a lot of his fine motor skills which certainly happened with Ellie Mae.
“That’s probably the hardest thing to see – he can’t reach out and play with a toy.”
A global research project into a cure for Batten Disease appears to be progressing well but it is feared any results could come too late for Caleb.
Duncan and Rod’s Cycle to the Circle fundraising page is still open. Visit justgiving.com/Duncan-Brownnutt4.