Family of boy battling rare disease urges support for Children’s Hospital fundraiser

By Delon Shurtz - Lethbridge Herald on December 16, 2023.

Submitted photo Thirteen-year-old Alex Olive looks at a tablet during one of his visits to the Alberta Children's Hospital. The southern Alberta boy lives with a rare disorder called Ataxia Telangiectasia.

LETHBRIDGE HERALDdshurtz@lethbridgeherald.com

Thirteen-year-old Alex Olive is very familiar with the Alberta Children’s Hospital in Calgary, but he surely wishes he wasn’t.

The young boy, who lives just west of Fort Macleod on the family dairy farm, has been in and out of the hospital since he was 18 months old when his mother Crystal first learned he may have Ataxia Telangiectasia.

Ataxia Telangiectasia (AT) is a rare, inherited childhood neurological disorder that causes immune deficiency and increased risk of cancer, and affects the part of the brain that controls muscle movement, a symptom that hit Alex at a young age.

“He was in a wheelchair when he turned 10 years old,” Crystal says.

The disease is so rare there are only about 500 cases in North America, which makes it almost inconceivable that Alex is the second child in the family to be inflicted with it.

Crystal’s cousin had the disease and died when he was only 20 years old, so when Alex was a toddler and first began walking, and was stumbling around, Crystal’s aunt and uncle recognized it for what it was.

“My aunt and uncle watched my son walk, and they were like, ‘he’s got AT,’ and I said there’s no way.”

Alex, whose immune system is particularly compromised, sees a specialist at the Alberta Children’s Hospital every couple of months. In August he spent three weeks at the hospital after he developed a lung infection, another common complication caused by the disease.

It’s no wonder then that Crystal is such a big supporter of the hospital, as well as a fund-raising campaign that began last month to raise money for the Alberta Children’s Hospital Foundation.

As a dairy farmer, Crystal is a member of Alberta Milk, a non-profit organization that represents Alberta’s dairy farmers. The organization has partnered with the foundation and has committed to match donations up to $100,000 until the end of December.

“I am not only grateful for the tremendous care my son receives, but also proud to be a part of a campaign that supports the critical care provided by Alberta Children’s Hospital,” Crystal says.

“You only get one shot with your child. As a parent, you want to do everything for your kid to give them the best quality of life imaginable. So this campaign, or the children’s hospital, that’s what allows my son to live his best life. Without the doctors, without the nurses, without specialists up there, I don’t think he would be as healthy as he is now.”

Albertans are urged to support the fundraising effort, which will benefit the largest public hospital for children serving Alberta, Saskatchewan, and Southeastern British Columbia. The hospital’s sole mission is to provide compassionate health care for all children and families.

The foundation serves as the primary charitable fundraiser for the hospital and for research at the University of Calgary for child health and wellness. It also partners with Alberta Health Services and agencies to support child health advancements across the province.

Stuart Boeve, a dairy producer and board chairman for Alberta Milk, is also a huge supporter of the campaign, and says the organization is willing to do whatever it can to help the foundation in its cause to help children.

“Everybody wants to be part of that,” Boeve says.

Anyone wishing to donate can go online at https://albertamilk.com/achf/ and click on the link.

“I know it’s tough right now for a lot of people, financially,” Crystal says. “It’s Christmas and it’s the holidays, and I understand that. But imagine being that parent with the child in a hospital right now. They don’t get to come home for Christmas, their kids are sick, and they may not come home.”

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