A dad whose two children were both diagnosed with a rare incurable illness days before Christmas has set out on a 500-mile bike ride to the Arctic Circle – on a TANDEM.
Duncan Brownnutt, 40, alongside family friend Rod Wark, has flown to Norway to take on a 500-mile tandem bike ride to the Arctic Circle to help raise funds for the Batten Disease Family Association (BDFA).
Duncan’s children, Ellie Mae, six and Caleb, five were both diagnosed with Late Infantile Batten Disease days before Christmas in 2013.
Duncan, from Leeds, West Yorks., said: “They were diagnosed on 20 December 2013. The doctor could tell Ellie Mae had the condition due to the results of a second MRI scan which showed her brain was shrinking.
“As Caleb’s symptoms were the same he told us he also had the condition. The doctor actually suggested we cancel our Christmas plans as he said we would have so much to think about, but we carried on as normal.
“When the kids were diagnosed the doctor was excellent. He called us in and just told us what he had found and and what it meant.
“He then gave us some time to think things through and booked for me to go back and see him again so I could ask any questions we had.
“The difficulty was what happened before that. As the condition is so rare it’s not the sort of thing that would be looked for in standard tests so we had nearly two years of knowing something was wrong but not knowing what it was or if it was treatable.
“Also when we were told we carried on as normal in a strange way. I went to work that afternoon which I guess was my way of dealing with it.”
“We only told immediate family so as not to ruin everyone’s Christmas and just did what we do every year, dinner at our parents houses.”
Ellie Mae died in May and Caleb’s condition is getting worse.
Duncan said: “Their symptoms are very similar although they have progressed at slightly different rates.
“Caleb’s speech never developed as much as Ellie Mae’s so when she lost her speech it was more noticeable but overall they are following the same pattern.
“This makes it worse as we know what to expect for Caleb.
“One of the hardest things has been watching what Ellie Mae went through and then seeing Caleb start on the same path.
“We were told that Ellie Mae would only live to be 11 or 12 but she died when she was six. It’s difficult to see Caleb deteriorate so rapidly as well as we’ll always question how long he’s got left.
“Losing Ellie Mae has been devastating but I don’t think we’ll regret the time we had with her.
“Ellie Mae was always very emotional. Always delighted to see her friends and family. She never got into a stage of being naughty or difficult.”
The condition starts to affect children from the age of three and causes a loss of mobility, speech and eyesight.
There is currently no cure for the disease, which affects just one to three children in the UK every year.
Duncan: “If parents both carry the genetic trait then their kids have a one in four chance of getting it. The rarity comes from the chances of the parents meeting in the first place.”
Despite Caleb’s life-limiting condition, Duncan said the youngster is fighting on to make the most out of the time he has left.
Duncan said: “Caleb is great fun but you have to do what he wants to do. His speech is almost gone completely so he finds it very difficult to explain himself but he has a limited amount of activities he enjoys.
“He has very limited mobility but he loves to sit and watch DVDs with you. The Lion King and Thomas the Tank Engine are his favourites and I watch them over and over each night with him.”
Duncan and Rod’s route will take them from the town of Roros in central Norway up to Trondheim in the north of the country and further still into the Arctic Circle.
They chose to begin their epic trip in Roros as it is the town where Late Infantile Batten Disease was first recorded by Dr Christian Stengel.
Duncan, alongside wife Lynsey, has raised £12,000 to support the BDFA since the children were diagnosed with the disease.
Duncan 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.”
To donate visit www.justgiving.com/Duncan-Brownnutt4.
