Duncan Brownnutt’s two children, Ellie Mae, six, and Caleb, four, may not live to see their teens after they were both diagnosed with extremely rare Late Infantile Batten Disease.
The Cookridge youngsters’ cruel condition, which starts at the age of three, will eventually see the siblings lose their mobility, speech and eyesight.
After seeing them deteriorate, Mr Brownnutt has set his sights on cycling 500miles from Norway to the Arctic Circle on a tandem to help a charity fund research that will finish in a decade.
The 39-year-old said: “There’s one clinical test going on at the moment and that will not end in time to help our kids unfortunately and that’s something we have to accept.
“It’s a 10-year trial and they don’t believe our kids have got 10 years left. I understand and accept that but it doesn’t make me want to stop supporting further research.”
Mr Brownnutt and his wife Lynsey were given the heartbreaking news one week before Christmas 2013 after Ellie Mae started having seizures.
The condition, which only affects one to three children in the UK every year, has progressed quickly for both children.
He aims to raise £5,000 for the Batten Disease Family Association by cycling from Roros, in Norway – where the first case of Batten Disease was reported – to the Arctic Circle Centre in northern Sweden over six days in July. To donate visit www.justgiving.com/Duncan-Brownnutt4.