Leeds dad Duncan is en route to Arctic Circle to raise funds after rare disease claimed daughter’s life

Rod Wark and Duncan Brownnutt. Picture by Tony Johnson.
Rod Wark and Duncan Brownnutt. Picture by Tony Johnson.
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A determined Leeds dad has set off on a 500-mile tandem bike ride to the Arctic Circle in a bid to raise awareness of the rare disease that claimed the life of his daughter.

Duncan Brownnutt, from Cookridge, travelled to Roros, in Norway, on Sunday with family friend Rod Wark to tackle the six-day challenge that will raise funds for the Batten Disease Family Association (BDFA).

Duncan Brownnutt with his children Caleb, four, and Ellie Mae, six, earlier this year before Ellie Mae passed away. Picture by Steve Riding.

Duncan Brownnutt with his children Caleb, four, and Ellie Mae, six, earlier this year before Ellie Mae passed away. Picture by Steve Riding.

The charity supports families with children affected by Late Infantile Batten Disease, which is a rare degenerative illness that starts at the age of three and sees children lose their mobility, speech and eyesight. There is no known cure.

Duncan’s children, Ellie Mae, six, and Caleb, five, were both diagnosed with the disease days before Christmas 2013. Ellie Mae passed away at Martin House Hospice in May while Caleb’s condition is worsening.

Duncan, who is 40, said: “They are the reason I’m doing it but it’s also the reason people should support us because this disease affects more than just Ellie Mae and Caleb and with no cure and little research there is also very little hope for these children.”

Late Infantile Batten Disease affects just one to three children in the UK every year.

Duncan, supported by his wife Lynsey, raised £8,000 for the BDFA after the children’s diagnosis and has already raised a further £12,000 from the ride.

Duncan and Rod chose the cycling challenge because Roros is where the first known case of Batten Disease was reported. They will also visit the grave of Dr Christian Stengels, who made the diagnosis.

Visit justgiving.com/Duncan-Brownnutt4 to donate or cycletothecircle.wordpress.com to read his blog.

Saphieh Ashtiany, the equality and employment lawyer

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