Alberta athlete with special needs competing in Calgary Marathon

19-year-old Kaleb has p.Arg290Cys, a mutation of a rare genetic condition called ARHGEF9-related syndrome.

From the 42.2 feet diaper dash to the 42.2-kilometre full marathon, 17,000 people will run, walk, or wheel in the Calgary Marathon this weekend.

Katrina Neil describes her 19-year-old son Kaleb as a strong and capable runner, especially after training up to 70 kilometres a week.

“We’ve heard from so many people that the Calgary Marathon is just like a giant celebration, it’s got such a fun vibe, its so inclusive,” Neil said.

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“Inclusion doesn’t mean lowering the bar, it means lifting people up and letting them earn their place in the story.”

She will be beaming with pride when Kaleb competes, for the first time, in the full marathon on Sunday.

“Kaleb’s story is about doing hard things, finding joy in the journey, and never letting limits define your finish line,” she says.

Kaleb was diagnosed with p.Arg290Cys in 2022, a mutation of a rare genetic condition called ARHGEF9-related syndrome.

“It affects how his brain communicates, because the gene that’s involved—ARHGEF9—controls a protein that helps brain cells send messages,” she explains, adding he is one of about 40 people in the world with the condition.

“When that gene isn’t working like it should, it causes a moderate to severe intellectual disability and epilepsy.”

Kaleb says he felt disconnected at school learning a modified curriculum, and despite his athleticism, there hasn’t always been a place for him in traditional sports.

“If you’ve ever felt like there is nowhere you fit, try showing up anyways and you might surprise yourself,” he said.

Kaleb says it was a pivotal moment when his uncle introduced him to Henderson Lake parkrun and Runner’s Soul.

He’s been seizure-free and off medication for over four years, due in large part to running.

“I feel really great, and it gets my stress out of my body,” he said.

“I can do anything and make a dream.”

Kaleb will graduate from Immanuel Christian Secondary School in Lethbridge, Alta., on June 25, with a certificate of high school completion, and will have completed both the Oldman Backyard Ultra, and the Calgary Marathon.

“He may not grasp every nuance of competition, but he understands effort, grit and determination—and he brings it every single run,” Neil said.

Joining in the Calgary Marathon

The runner’s expo and race package pickup are Friday between 11 a.m. and 8 p.m. and Saturday from 10 a.m. to 5 p.m. at the GMC Stadium at Stampede Park.

Saturday races start with the 10-kilometre run at 7:30 a.m. from GMC Stadium to Enmax Park, followed by the five-kilometre walk and run on the same route starting at 9:15 a.m.

The kids race starts at 10:30 a.m. in Lot 2 on the east side of the Saddledome, and the diaper dash is at 11:30 a.m. in Enmax Park.

The final day kicks off at 7 a.m. at GMC Stadium with participants racing either 21.1 kilometres or 42.2 kilometres and ending at Enmax Park.

Kids will race at 9:30 a.m. in Lot 2 on the east side of the Saddledome.

“You don’t know who else is sitting out there, with not even this specific diagnosis, but something else that just makes them feel alone, and the running community is second to none,” Neil said.

Registration closes Friday at 6 p.m. for the Saturday races, and Saturday at 2 p.m. for the Sunday races.

For the latest on road closures check out this interactive map.

Update

Speaking to CTV News after the Calgary Marathon, Neil says her son’s  goal was to complete his marathon between 4.5 - 5.5 hours.

“He finished strong at five hours and four minutes, even sprinting the last kilometre for an emotional finish,” she said.

“He said it was the best moment of his life and his favourite run.”

Kaleb said he was surrounded by people this weekend that have inspired him to keep moving forward and keep pushing himself to achieve big goals.