A devoted Leeds dad is determined to raise thousands to fund medical research, which he has been told will come too late to save his own children.
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, Duncan, 39, has set his sights on cycling 500miles from Norway to the Arctic Circle on a tandem to help a charity fund research that is unlikely to yield results for a decade.
He told the YEP: “With our kids we understand that the way research works – it’s not a quick process. 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.”
Duncan and his wife Lynsey were given the heartbreaking news one week before Christmas 2013 after Ellie Mae started suffering epileptic seizures.
The condition, which only affects one to three children in the UK every year, has progressed quickly for both children.
Ellie Mae now relies on a movable hospital bed at their home and an extension is being built to cater for a new wetroom. Wheelchairs, walking frames and several hoists have been brought in to support the youngsters.
Duncan explained that over the last two months Caleb has gone from an active toddler to completely losing his mobility. He said: “He can’t walk anymore and he still tries which is a problem, he gets quite angry with things he can’t do. He’s young and he can’t quite understand it.”
Nevertheless Duncan and Lynsey remain determined to make the most of their children’s time. They travelled to Disneyland, Florida, last year and have more trips planned for 2015.
Since the diagnosis, Duncan has raised £8,000 for the Batten Disease Family Association (BDFA), which funds research and supports affected families.
For his next challenge he’s aiming to raise £5,000 for the BDFA by doing a 500mile tandem bike ride 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.