‘These kids have a chance’: John Davidson sees hope for boys with Duchenne Muscular Dystrophy

Hope for boys with Duchenne Muscular Dystrophy. CTV London's Brent Lale reports.

Learning their son Spencer had Duchenne Muscular Dystrophy (DMD) came as a huge surprise to the Vockeroth family.

“We did notice some of the signs and symptoms, but it seemed subtle at the time,” said Anna Vockeroth, Spencer’s mom.

“When we look back it’s more obvious, but it was a big shock.”

In 2024, just prior to Spencer’s 5th birthday, he was diagnosed with DMD after a few years of attempting to pinpoint exactly what was causing his leg pain, speech delays, tripping and inability to master stairs.Last year they formed a team named “Spencer’s Village” and created their own event in the fight against defeating Duchenne.

The second annual event was even bigger.

“It’s overwhelming and it’s a much bigger turnout than I was expecting, but it means so much to us,” said Vockeroth.

“The biggest thing is just connection with our community and spreading awareness and improving treatments and options for Duchenne families.”

It was an honour for them to have John Davidson- the founder of Jesse’s Journey (now Defeat Duchenne Canada) – join them Saturday.

“When I look at guys like Spencer, I really see kids who have a honest shot at it now,” said Davidson.

“It’s not just dreaming, as we probably were at the start, that things would get better. These kids now with things like gene therapy and CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats), all the new technologies that are legitimately there on the scene, they’re not on the horizon. We’re waiting for they’re working with these things, and these kids have a chance. I promised Jesse I would do everything I could to fund research and try and find a treatment and eventually a cure. That’s why I’m here”.

The Vockeroth’s also believe it’s a hopeful time for DMD.

“There’s a lot of treatments, coming out,” said Tom Vockeroth, Spencer’s dad.

“Access to treatments is a little bit tougher but they’re coming. Defeat Duchenne and John (Davidson), we have to thank them a lot as they started it. Without them, we would have been a family just trying to figure it out on our own.”

Tom says his son is learning his independence and how to be included and participate.

While Spencer adapts to his life-long condition, so does his parents.

“I’m learning more about Spencer every day,” said Tom.

“Kind of how to support him and how to give him that best life.”

Davidson – who sees his son Jesse in many of these young boys he meets – is proud of those who participate in these events in all ten provinces and territories in Canada.

“We have fulfilled part of the dream and that we’re now giving well over a million dollars per year to research thanks to the Jesse Davidson Endowment,” said Davidson.

“We don’t have a large corporate sponsor and I think it’s truly philanthropy when people reach into their own pocket to pass you some money to make a difference in the world of research. We’re waiting on these advancements, and I think these kids have a chance.”