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Annual A-T Walk for Cure helps family on their road

A-T Walk for a Cure

Rob and Crystal Olive, son Alex (left) and nephew Joey Van Rootselaar joined the 14th annual A-T Walk for a Cure on Saturday.

The annual A-T Walk for a Cure continued Saturday its tradition of delivering thousands of dollars for research in a rare genetic disease.
The walk raised $61,000 Saturday through pledges, donations and live and silent auctions.
That brings to $72,000 raised this year for the A-T Children’s Project, including $8,000 from Rare Disease Day in February and $3,000 from a road clean-up in the spring.
Just as important, the event Saturday at Hilltop Dairy served to deliver hope for Crystal and Rob Olive, whose two-year-old son Alex has ataxia-telangiectasia, or A-T.
“This is what we live for, is for hope,” Rob said. “That one day Alex won’t have to live with this.”
A-T is a rare genetic disease that attacks children, gradually robbing them of motor skills. There is no cure or treatment and children with A-T rarely live through their teens.
On Saturday at Conrad and Rhonda Van Hierden’s Hilltop Dairy north of Fort Macleod, hundreds of people took part in a five-kilometre walk and live and silent auctions to raise money for research.
The Van Hierdens started the A-T Walk for a Cure when their son Randy was diagnosed with A-T. Randy died from complications from the disease in 2004.
The Olives were living at Fort Vermilion, where Rob was posted with the RCMP, when Alex was diagnosed last fall with A-T.
Alex, who celebrated his second birthday in March, had been walking for some time but was showing little improvement.
“We wasn’t getting better at his balance,” Rob said. “He was always tripping.”
Rhonda Van Hierden, Crystal’s aunt, said Alex’s movements were similar to Randy’s at that same age.
The Olives had Alex tested by their doctor, who referred them to the Children’s Hospital in the neuro clinic. The diagnosis was made.
“It’s been a very long road — a very sad road,” Rob said of the short months since diagnosis. “A very encouraging road at times with all this. It’s our road that we have to walk now.”
Rob and Crystal decided to move closer to Fort Macleod, where they would have the support of the A-T network already in place.
Moving to Claresholm also brought Alex closer to family at a critical point in his young life.
“These next years are his best years,” Rob said, explaining until about the age of six Alex’s body will develop faster than the disease can take brain cells. “He’ll actually look like he’s getting better. He’ll walk a little better, he’ll lose a litle bit of his wobbliness. After that the disease starts taking over.”
Until that starts to happen, Rob and Crystal want Alex to build strong relationships with his young cousins and other family members that will sustain him through difficult times ahead.
Being closer to Rhonda and Conrad Van Hierden will also help. Conrad is president of the Canadian chapter of the A-T Children’s Project.
“He has the network already set up so we don’t have to build that,” Rob said. “For him (Conrad), it was starting from nothing and for us, we actually have a base we can build from which is very helpful.”
Events such as the A-T Walk for a Cure help the Olives on their road.
“It’s a big boost, it gives you that thing you’re looking for, that great feeling,” Rob said. “We could wallow and be sad but we choose to come out here and do what we can to make things better.”
“It’s not just him. There’s other kids that have this disease too, and we’re doing it for everybody.”
The Olives are buoyed by breakthroughs in research to point toward a treatment or cure.
The money raised by the A-T Walk for a Cure will keep scientists working in the lab — and provide much-needed hope.
“Hope is probably the best word to use,” Rob said. “When you see this many people come out and they’re all supporting this cause, and all the money generated from today goes directly to research, that’s what we have to rely on.”
“Without that research we’re not going to find the cure, we’re not going to find even a therapy that can help him.”