A couple from Wainfleet are determined to raise £8,200 to go to America to take part in ground-breaking research against Huntington’s Disease.
Chris Dower, 35, was diagnosed with the condition earlier this year.
The brain damage it causes gets progressively worse – affecting movement, perception, thinking, and behaviour – and is fatal. There is no known cure for this disease.
Although the condition is often hereditary, Mr Dower could find no evidence of it in his family history. However, it has left him concerned over his own children’s future.
He has three children – Jordan, 15, Henry, eight, and the youngest Jessica-May, seven.
He said: “When I had the genetic test confirming I had the condition it was a bit of a sucker punch to be honest.
“It leaves you with questions such as ‘will my children have it?’ It’s a 50/50 chance of them having it.
“They’re not old enough for testing at the moment but what about when they’re old enough?
“It’s quite a big melting pot of many different emotions and things happening, you don’t really know where you’re going from one day to the next.”
Mr Dower acknowledged there were trials in the UK looking at Huntington’s Disease, but said none of the ones he had found were looking at treating – instead looking at how the disease progresses within a person over time.
Mr Dower had read about a drugs trial in the US at New York University School of Medicine next year.
He said: “It might be a selfish thought but the UK trials have no chance of helping my situation, but looking at it – if my children do have it, this is future research which could help them.
He later added: “There is always someone worse off than yourself and if this trial treatment should not work – it will have been a stepping stone to a future one that will.”
Efforts have already begun to help Mr Dower and his family get him to the US in time for the trials, however, it has to be self-funded.
Mr Dower said the support and offer of donations he had received from local people and businesses had been ‘fantastic’. He called the efforts people had made ‘overwhelming’.
As of Monday, Mr Dower’s Just Giving page had received £3,615 of donations.
Further events set to take place include a Family Fundraiser at the Moody Cow on Sea Lane, Ingoldmells, on Saturday, October 29.
Mr Dower’s wife Emma will also be taking part in a head shave on Saturday, November 5, at the Welcome Inn, in Burgh Road.
To donate to Mr Dower, visit www.justgiving.com/crowdfunding/christopher-dower