Hundreds of Grade 5 students gathered in the Citadel Park School gym in northwest Calgary on Monday afternoon to cheer on a community member as he attempts to break a World Flying Disc Federation world record.

Theo Begin, a Grade 5 student, was born with muscular dystrophy. He was diagnosed with Duchenne muscular dystrophy (DMD) – a rare genetic disorder that causes a progressive loss of muscle – at around six years old. He started training to set the World Flying Disc Federation’s world record for wheelchair users under 18 after he heard about Rob “Frisbee Rob” McLeod, who beat 13 Guinness world records. McLeod also worked with Theo a few months before the 10-year-old attempted to set the world record.

“I was nervous and excited. It was fun. I wanted to make a world record, and it’s something new that I did,” Begin told reporters on Monday.

Nadia MacKenzie, Begin’s mother, said she was emotionally moved by Theo’s performance and was proud that he could set a new world record for the disc federation. She said the event is going to be a highlight of his life for the foreseeable future.

“I couldn’t even imagine it. I don’t even know what to say. I’m having a hard time finding words for it. I’m trying not to choke up seeing that many people here to support Theo,” she said.

“It’s just grateful and honouring and so happy that Theo gets to see a different side of life than just being restricted. He knows that people are actually behind him. The school did an amazing job.”

McLeod said nobody has set the world record for wheelchair distance under 18 before. Even though Begin could have set the record at five feet, the 10-year-old threw the frisbee 27 feet across the school gym.

“I didn’t work with him too much. I supported him as much as possible, but my job took me away a lot. I was able to come by the school a couple times and work with him, gave him some Frisbees, gave him some tips, and just kept checking in with the school and making sure that everything was good. It was really special to know that just he had his school rallying around him and really supporting him,” he said.

“I think this record will be pretty emotional. I’ve been trying to help kids set records for a long time. I really love that he took the initiative. It was just really special to see him doing this, knowing that he loves frisbee and it’s something that he can do.”

Alison Bates-Church, assistant principal at Citadel Park School, said the world record was life-changing for Begin.

“Theo is a pretty special kid. We spend a lot of time together, and I’ve spent a lot of time with him over the last little while, so to see him do this today and to give him something that really is life-changing and really is an absolutely huge accomplishment and has been an incredible experience,” she said.

Begin said he wants to inspire more kids his age to reach their goals and dreams.

“You can do it. I think anybody can do what I showed them,” he said.

Advocating for more research, funding into DMD treatment

MacKenzie said she’s trying to raise more awareness about DMD in Canada because it is a terminal illness. According to the Muscular Dystrophy Association, the life expectancy for people with DMD is around 25 years old. MacKenzie said she’s been emailing Alberta Health Services to put more money into DMD research and treatment.

“Eighteen months ago, Theo was standing and taking two steps. Overnight, there were no more steps. It’s a very progressive illness and unfortunately, these kiddos don’t get enough advocacy,” she said.

“Theo’s been away from home for 108 days right now. I used to carry him on my back because there’s not enough awareness and when we need the equipment and help, it doesn’t come very fast.”

Treatment and accessibility tools are also expensive, MacKenzie added. For example, accessible vans can cost between $50,000 to $220,000.

“How are [people with disabilities] supposed to afford that, let alone families with children with disabilities? I can’t go to work because there’s no awareness. There’s no help out there. I think it’s important that people understand and more awareness brings more help for families,” she said.

MacKenzie said she is trying to create a support group on Facebook for families of kids with DMD. So far, Begin is the only kid she knows who was diagnosed with the illness in Calgary.

“That’s how rare it is and that’s how secluded it is. I’m linked with a group for people with rare diseases, but DMD has its own particular rarities in it,” MacKenzie said.

She is also encouraging people to donate to Muscular Dystrophy Canada if they want to support DMD research and families of kids with DMD.