A devoted Leeds dad is embarking on a marathon challenge to raise money for a cause that couldn’t be closer to his heart.
Duncan Brownnutt’s two children Ellie Mae, five, and Caleb, four, may not live to see their teens after they were BOTH diagnosed with Late Infantile Batten Disease.
The condition is so rare that only five new cases are diagnosed in the UK every year.
The cruel disease, which starts at around the age of three, will see the siblings eventually lose their mobility, their speech and their eyesight.
Duncan, who lives in Cookridge, is preparing to run a marathon in September to raise money to support Batten Disease Family Association.
He said: “We’ve been really touched by some very generous support.
“The children’s health sadly continues to deteriorate.
“Ellie Mae has had a an operation to fit a feeding tube as she had so much trouble swallowing.
“And Caleb’s mobility is getting noticeably worse.”
Duncan and his wife Lynsey, who were given the heartbreaking news one week before Christmas, are treasuring every moment they have with their precious children.
And they enjoyed a special holiday in Disneyland, in America, thanks to a generous collection raised by Duncan’s colleagues.
Kind-hearted YEP readers helped the family raise thousands of pounds when Duncan endured a 150 miles of pain challenge.
He added: “The best case scenario is that they will get to their mid-teens.
“The worst case, most horrible scenario is that we have got another five years with Ellie Mae.”
To donate visit www.justgiving.com/Duncan-Brownnutt3.