Sarah Power has known since she was 23 years old that her body carries a death sentence.
At an age when most people are thinking about careers and travel, Power received confirmation that she carries the gene mutation for Huntington’s disease — a rare and fatal illness that causes nerve cells in the brain to progressively decay, stripping away a person’s ability to move, think, and maintain their mental health. There is no cure.
“I fell to pieces,” Power, now 41, recalled. “I am pre-symptomatic, but it feels like I’m a ticking time bomb. It’s made me live my life differently, though, knowing that I will get ill at some point.”
The disease runs deep in her family. Power watched her grandmother struggle with it as a child, and her father — a proud man who refused to acknowledge his diagnosis — died from Huntington’s in 2017 at the age of 63. Her grandfather’s death certificate listed the same cause.
Power says she first understood something dark was looming when she was just five years old. A representative from the Huntington’s Disease Association came to her family’s living room to explain her grandmother’s condition. “I did feel this darkness in the room,” she recalled. As a child, she naively believed that if she never smoked — as her grandmother had — she might avoid the disease entirely.
By the time she was 18, the medical system was quietly preparing her for the inevitable. Genetic counselling appointments were scheduled without full explanation. “They knew my dad had it, and they were just telling me without telling me,” she said.
When the official diagnosis came, it broke her. “I cried more than I thought possible. I just couldn’t stop. The world was still turning, but it was as though it stood still for a while.”
Her friends responded the only way they knew how — by getting her out of the country. They saved up and took her backpacking through Brazil, Bora Bora, New Zealand and Thailand. “It was the best thing I could have done,” she said.
That spirit — choosing life in the face of an impossible diagnosis — has defined the 18 years since.
But in September 2025, everything shifted. Power received an email from the Huntington’s Disease Association about a potential new treatment. Early results suggest it could slow the progression of the disease by as much as 75%. The catch: in its current form, the procedure requires a surgery lasting more than 12 hours.
For Power, none of that dampens the hope.
“It’s the breakthrough we’ve all been hoping and praying for,” she said. “Now, I might be able to grow into an old lady and enjoy all the things my mom has. I keep pinching myself.”
Huntington’s disease typically begins showing symptoms when a person is in their 30s or 40s. Power remains pre-symptomatic — but she has never allowed herself to plan too far ahead. No thoughts of grandchildren. No pension planning. Just the present, and gratitude for it.
“I don’t take anything for granted,” she said. “I just try to live my life as much as I can, and I’m glad I’m still here.”
