Local boy battling rare genetic disease

By Rob Vogt

Ataxia-telangiectasia, or A-T, is a rare progressive, genetic disease that affects the nervous system, immune system, and other body systems.
There are only 500 documented cases in North America, and three children in Alberta.
Children with A-T are in wheelchairs by age10, and rarely survive into their 20s.
Local teen Alex Olive was diagnosed with A-T in 2011.
His mother Crystal Olive said there is no known treatment or cure.
The only thing that can be done is to manage the disease.
Since her son’s diagnosis, Olive has worked to raise money and awareness of the disease by working with the A-T Children’s Project.
This initiative funds research including a multidisciplinary clinical centre at Johns Hopkins Hospital in Baltimore, Maryland, with the world’s leading specialists in the disease.
“The more we know, the more we can do, if anything,” Olive said.
That often means learning ways to manage the disease.
For instance, Alex is now taking an anti-oxidant that helps with the tremors. However, it is an experimental drug the family has to buy out of its own pocket.
The family has also been alerted to screen for tumours on the liver.
A study using gene therapy has shown promise, but it will take time to see its full effects.
“Research can’t go fast enough,” Crystal said.
For the past two-plus years Alex has also been working with local personal trainer Amy Detmers. She does strength training with him once a week.
Crystal said they have learned the stronger he is, the less problems they have, because exercise leads to a healthier body.
Detmers is raising funds for the A-T Children’s Project by presenting the YABBA Strongkids Classic during Fair Days weekend in Claresholm the second weekend of August.
She talked more about that when she made a presentation at the second annual Women and Heart Disease Information Night on Wednesday, Feb. 19 at the Claresholm Social Centre.
Detmers explained training has shown Alex what he is capable of. He is not letting A-T take anything away from him, and anything is possible.
“The sky’s really the limit,” she said. “When I look at Alex, I see potential.”
She later added that when she or her clients look at a challenge, she says, “If Alex can do it, why can’t we?”
The Olives – Crystal, her husband Rob, and sons Alex and Clark – are now training to hike the Grand Canyon in October, and have purchased an adaptive wheelchair for Alex.
The event is a fundraiser for A-T.
They will be hiking down the South Kailab Trail down to Phantom Ranch and back up Bright Angel Trail for a total of 26.7 kilometres with 1,447 metres of elevation gain. To make it down there for an abled person with full gear requires a lot of physical conditioning. To attempt this with Alex in his Joelette adaptive hiking chair and just three people is considered impossible – but the Olives are going to do it.
More information, and how to donate, is available by visiting https://atcp.org/event/alexsarmy-2025/ (no dashes or spaces).