A run through the jungle: Family devastated by Huntington's disease given hope by distance runner

'I am humbled': NS woman gives family hope A family devastated by generations of Huntington’s disease has been given new hope by a determined woman with a kind heart.

Brad Carmichael describes good days as when he has enough energy and coordination to stand up.

"I was skiing two years ago. Now I can't walk," says the 29-year-old, from his family home in Timberlea, N.S.

Brad was diagnosed with Huntington's disease in 2018. It's a rare, mostly inherited brain disease, and always fatal.

"It's been with me since I was born," says Brad, who grew up knowing there was a 50/50 chance he would develop the disease, which took his grandmother's life, then his father's, Stephen Carmichael, in 2014.

"It was a hard fought battle," says Brad.

Now, his mother, Peggy Carmichael-Mastin, watches her once-athletic son engaged in the same struggle.

"He was good at everything," she says.

Brad misses "living life to the fullest" as he puts it, while many of his friends are settling down and becoming fathers.

A few weeks ago, Peggy says she laid in bed, coping with the incredible pain of her family's ordeal, "and then this comes up and it filled us with brightness and hope and light."

That's when Katie Mahoney entered the picture – a 29-year-old and the co-founder of "We Are Young," a local charity that grants wishes to deserving seniors.

"I always felt like he was a bright light," says Katie, describing Brad, who she knows through his sister Brittany.

Humbled by Brad's "daily challenges," Katie has pledged to raise $20,000 so the entire family can take a European cruise - a dream destination of Brad’s since childhood.

"We were thinking a drive to Peggy's Cove would be nice!" says Peggy.

Katie is fundraising through pledges of support for her own upcoming adventure this June.

She's running the 2022 Jungle Ultra - an epic five-day endurance race through the Amazon Rainforest in Ecuador.

"You have your backpack to carry, all your food and a hammock," says Katie of the sparse comforts.

A year ago, Brad was on an experimental drug to treat his Huntington's symptoms, but it didn't work.

"My tank is on empty," he says. "I need this trip."

And so does his mother Peggy.

"I'm just looking forward to having fun," she says.

Katie's asking for $87 per sponsor and 230 of them in total - one for each kilometre of the Jungle Ultra.

"It means the world," says Brad, who says there’s no words for how grateful he feels.

Anyone who wants to donate to the cause can do so through the online GoFundMe page.