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Daniel Pascoe is 25 years old; he has a 50-50 chance of inheriting the faulty gene from his father.

There’s a community out there, they need to be heard

Daniel Pascoe

Huntington’s Disease (HD) is a condition that stops parts of the brain working properly over time and is usually fatal. There is no treatment for HD and no cure.

“This whole thing around getting tested, I am considering it.” Daniel explains on a phone-call to his best friend in the radio documentary In Two Minds.

The decision on whether to be tested hasn’t been an easy one and is linked to some sad moments of his past, including his father’s death.

He was ten-years-old and had gone to bed as normal, woken up early and walked to the top of the stairs. It was there he saw his granddad who took him into a room and told him that his "dad didn’t come home last night".

“While my dad’s death was deemed an open-verdict, it’s my understanding that it was suicide,” Daniel says.

Daniel was not aware of what Huntington’s Disease was at that age, “I just knew it was a bad thing and it made dad walk a little funny,” he explains as he revisits the area he grew up in along with his girlfriend, and producer, Meah Howlett.

It is during the visit that Daniel feels he is ready to explore the impact of Huntington’s Disease and more importantly, he feels he has to in order to have "a real thought-out decision" on being tested.

Keeping an open-mind, Daniel and Meah visit people who have been affected by HD and a few months’ later Daniel walks into his first HD support group, talking with people who have had the test.

“I have presented radio shows and that was more scary,” Daniel says on reflection. “I didn’t realise how it doesn’t have to hold you back at all, people are not letting it define them and that’s just amazing.”

Daniel continues his journey of knowledge, finding out more about science of HD and the support available should he get tested. It all leads to a quiet moment of reflection, during a walk on the beach.

“Even though it meant going through some of the more horrible moments, the more challenging moments I think there’s a community out there, they need to be heard, they need to be met and they need to be talked about,” he says.

And after the journey he’s been on, is Daniel going to be tested?

“I want to do it on my terms, not HD’s terms,” he says.

Originally broadcast on Â鶹Éç Radio Cornwall