March 8, 2019 2:05 pm
Updated: March 8, 2019 3:03 pm

Saskatoon man with rare disease trains for bike race in Spain

WATCH ABOVE: A Saskatoon man born with a rare disease is gearing up for one of the most challenging amateur cycling events next month in Spain, with a goal of finishing the race and raising Sturge-Weber Syndrome awareness. Nicole Stillger has Donnie Hood's story.


Donnie Hood is gearing up for one of the most challenging amateur cycling events next month in Spain. He’s taking on the 167 kilometre route of the Mallorca 312.

The 35 year-old has biked thousands of kilometres around Saskatoon, but has never trained for anything like the race in Spain before.

“My brother who is doing it – I actually ride more than him – he put kind of put me up to it,” Hood explained.

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He’s using the race to not only challenge himself, but bring awareness to Sturge-Weber Syndrome – a rare congenital disease he’s struggled with his entire life.

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It affects about one in 50,000 people and is characterized by a port-wine birthmark on the face. The disorder can cause a number of complications like seizures and glaucoma.

“I’ve lost my vision in my left eye, which is where all my Sturge-Weber is, and my whole health effects are pretty much on my left side,” Hood said.

“I would say I’m one of the better-off ones. I seem to  be able to do whatever I want to a certain extent, where some of the other people are in wheelchairs or scared to do certain things because of seizures.”

While Hood hasn’t had a seizure in over 30 years, his road hasn’t been easy.

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“Going through school and growing up with it I would say was the most difficult thing for me,” he said.

“I still struggle with reading and small print, and that’s a big factor for me.”

When Hood was born doctors told his family he wouldn’t live past the age of 12. He says a general lack of awareness of the disease has magnified his struggles.

“A lot of people don’t know what it is,” he said. “I still get people coming up to me and asking what it is or making comments to me about what happened to me.”

Now he’s dedicated his race to changing that – fundraising for the Sturge-Weber Foundation; a ray of light in his world.

He’s attended conferences every couple of years, meeting others with the disease.

As for Hood, with just over a month until the race, his focus remains on training.

“It’s really helped because I’m going to be doing about 2,500 metres in elevation during the ride as well,” Hood said.

Riding 167 kilometres for a cause he hopes will help others as much as it’s helped him.

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