‘Month of pain’ push by Cookridge dad to help charity

Wharfedale Observer: From the left are Pastor Wes Johnston (Leeds Reformed Baptist Church), the Brownnutt family and MP Greg Mulholland From the left are Pastor Wes Johnston (Leeds Reformed Baptist Church), the Brownnutt family and MP Greg Mulholland

A couple are facing heartbreak after both their children were diagnosed with a degenerative condition which means they are unlikely to live into their teens.

Duncan and Lynsey Brownnutt were given the devastating news that five-year-old Ellie Mae and three-year-old Caleb both suffer from Late Infantile Battens Disease.

The disease is a degenerative condition which usually starts around the age of three and sees youngsters very quickly lose their mobility, speech and eyesight.

The condition is so rare that it only affects about 30 children in the UK with only four to five new cases diagnosed each year.

Now Duncan has embarked on a 150-mile ‘month of pain’ to raise money for the Batten Disease Family Association, which has helped them in their time of need.

Duncan, of Cookridge, has been running five miles each day in April and has already raised more than £5,000 for the charity.

He said: “Although this is a horrible situation and we're still coming to terms with the news, we have been overwhelmed by the support we've received from family and friends, church and colleagues.

“We're also aware that there will be other people who aren't as fortunate and don't have the support network we have.

“It's important to help the BDFA to help those people as they struggle to deal with this disease.”

The association’s fundraising officer Nikki Radcliffe said: “We are so grateful to Duncan for putting himself through one month and 150 gruelling miles of pain to help us to support other families whose lives have been turned upside down by Batten Disease.

“No family should have to face such a terrifying journey alone, and we could not provide the vital help that we do without extraordinary people like Duncan taking on tremendous challenges.

“Thank you so much to Duncan and the people who have sponsored him to raise such an incredible sum of money. The BDFA also facilitates research into Batten Disease with the hope of one day finding a cure to this horrendous disease.”

Duncan’s MP Greg Mulholland joined him for a run over Easter.

He said: “I was delighted to support Duncan's 150-mile month of pain by running a leg with him.

“Despite the early start on Easter Monday it was great to see a good turnout of runners from Leeds Reformed Baptist Church including Pastor Wes Johnston. It was a pleasure to meet Ellie Mae and Caleb and I am sure they will be very proud of their dad when the challenge is completed.

“Duncan's challenge is a great way to highlight Batten Disease and to raise money for much needed research and I hope people will sponsor him to make his 150-mile month of pain a big success.”

Visit justgiving.com/Duncan-Brownnutt2 to sponsor Duncan.

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