A Leeds dad, whose two children may not live to see their teens due to a rare disease, has been backed by dozens of riders in his bid to fund vital research.
Duncan Brownnutt, who is from Cookridge, took to two wheels for a 10-mile awareness raising ride from the Caring for Life Farm Shop, in Cookridge, to Eccup Reservoir and back on Saturday, ahead of a 500mile tandem ride to the Arctic Circle with friend Rod Wark in July.
The 40-year-old and his wife Lynsey have been supporting their children Ellie Mae, six, and Caleb, four, through their ongoing battle with Late Infantile Batten Disease.
The youngsters’ cruel life-limiting condition is seeing the siblings gradually lose their mobility, speech and eyesight.
Duncan has been inspired by their plight to raise funds for the Batten Disease Family Association (BDFA). He said: “We’ve got a fairly good support network of family and friends but even us, in that situation, are in touch with the BDFA quite a lot.
“We’ve already had to reach out for support and there’s only one person in the country that specialises in that, which shows how important it is for us to raise as much as possible.”
Duncan and Rod will cycle from Norway – where the first case of Batten Disease was reported – to the Arctic Circle in a bid to raise £10,000 to fund BDFA research that is unlikely to yield results for a decade. Despite the fact that doctors have told the Brownnutts that the results of the trial will likely come too late for Ellie Mae and Caleb, the riders have already raised £5,500 to help others.
The children were diagnosed with the condition after Ellie Mae started suffering epileptic seizures in 2013. It affects just one in three UK children a year.
In recent months the once active Caleb has lost his mobility, while Ellie Mae, who relies on a movable hospital bed, has been having more serious fits.
Visit cycletothecircle.wordpress.com for Duncan’s blog or www.justgiving.com/Duncan-Brownnutt4 to donate.