Kamloops family looking for support for son living with rare muscular degenerative disease

KAMLOOPS — Jude Mitton is just like any other eight-year-old boy, liking what most youngsters do.

“Listening to music, playing video games, going swimming, riding horses,” he said.

However, Jude has an extra hurdle in participating in some activities. He has Duchenne Muscular Dystrophy, a rare disease he was diagnosed with at age four.

“We know that your body is about 40 to 60 per cent of muscle, so it not only affects skeletal muscles with things like running and jumping and being active, but also things like your heart and your respiratory muscles,” said Jude’s mom Kasha Mitton.

One in 16,000 children in Europe and North American suffer from Duchenne Muscular Dystrophy, mostly affecting boys.

The Mitton family is the B.C. representative for the upcoming Virtual Walk to Defeat Duchenne on Sunday (May 30) to raise money and awareness for the disorder. A medication Jude is trying out — not yet approved in Canada — costs $1 million a year.

“More than that, it’s really about the community. Yesterday (May 27), Jude, his school put on a walk and they all had, he goes to Lloyd George, they all dressed like superheroes and walked around the school, so that was really cool,” said Kasha.

The family has felt support from their circle in the community. However, it’s not always easy, especially watching your son and brother struggle at times.

“Man, it’s tough. It really teaches you to live for today,” said Jude’s dad Jeff Mitton. “Don’t look too much into the future. Just appreciate what you have every day that you have it.”

Jude’s sister Kaia added, “It’s just not fair for him. You always think, ‘Why him? Why does it have to be your brother who has that?’ It’s just really hard to watch him be sad.”

However, Kaia is the best big sister, Jude’s biggest fan.

“Sometimes it’s hard for him to walk up stairs and do other things, so normally when I’m playing with my friends or something and we’re doing something really active, and then he’s kind of sitting out, I normally go sit out with him,” she said.

Until recent years, boys with DMD live just through teenage years. With advancements in medicine, hopefully Jude’s story is different.

To register for the walk or support the Mitton’s “Hey Jude” team, you can click here. With its virtual nature, people can walk to support the cause any time on Sunday.