Calgarian to raise money, awareness for Vancouver boy’s medical condition

Five-year-old Forester Perrin has special needs because of Fragile X syndrome, which means he will need one-on-one support the rest of his life, and raising money now for a registered disability savings plan allows it decades to grow before his mom and dad are gone

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Forester Perrin, who turns six years old on May 22, faces a slew of health challenges, among them being diagnosed with a rare condition called fragile X syndrome, which means a protein needed for normal brain development isn’t there.

About one in 7,000 males (and one in 11,000 females) have been diagnosed with FXS, according to the federal Centre for Disease Control.

Forester was 2½ when he was diagnosed with autism. Diagnoses of ADHD, intellectual disability, and language disorder followed, before his full diagnosis of FXS was confirmed in December 2020.

“Five years old and he has five pretty significant diagnoses,” says Ben Perrin, the boy’s father.

Perrin teaches law at UBC. If his name sounds familiar, it might be because of a book the one-time criminal-justice adviser to Prime Minister Stephen Harper published in March criticizing Canada’s prohibition approach to the opioid crisis (he wrote an earlier book exposing slavery in the modern world).


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Unless you have a child of your own who is, say, autistic, it is hard to fathom how lonely parenthood can be.

So when the Perrins’ longtime friend Nigel Goodwin in Calgary volunteered to run, scramble, climb and otherwise compete in back-to-back Spartan races this summer to help raise money for Forester, the couple was over the moon.

Forester with his family’s rabbits, Marshmallow and Cinnamon. Arlen Redekop/PNG
Forester with his family’s rabbits, Marshmallow and Cinnamon. Arlen Redekop/PNG Photo by Arlen Redekop /PNG

Fragile X syndrome places no limits on longevity — there is no reason Forester can’t live to be 82, the normal life expectancy for a male in Canada.

The money raised goes into a registered disability savings plan, which has a maximum allowable limit of $200,000 donated before someone can begin withdrawing from it at age 60. Obviously, getting near that maximum limit sooner rather than later allows compound interest to work its magic over the intervening 54 years.

“We had felt so alone for quite a long time,” Perrin said. “We need help, a lot of help, to support our son, who is an incredible, incredible little guy. When he started getting diagnosed, we were really concerned about what’s going to happen when we’re gone?”

Like most parents, the Perrins biggest fear is they won’t be there when Forester needs them. On their own, they estimate they would need probably 20 years to max out their son’s registered plan.

When the Perrins shared Forester’s story with Goodwin, he wanted to help out in a way that was challenging not just physically, but mentally — something almost unimaginably hard and yet infinitely easier than the challenges Forester faces — and turn that into a vehicle to help out his friends’ boy.


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“Something that would get people’s attention, something I could say, ‘Hey, as hard as this is, it’s nothing compared to what Forester faces,” Goodwin said over the phone from Calgary, where he and Perrin met in high school.

“I’m not an athlete, I’m not a runner,” he added. “I’m training five days a week for this and I do not enjoy it. It is tough.

“But Forester is depending on me, and I’m very fortunate I have a healthy body, healthy mind. I just can’t even imagine what it will be like for Forester to go through his life with this disability.”

Goodwin has run two Spartan races in his lifetime, but not on back-to-back days, and not at 42 years old.

A Spartan race is run over obstacle courses. There are four types, and Goodwin will enter two back-to-back on an August weekend in Red Deer, Alta., running a total of 15 kilometres and overcoming 45 obstacles.

Goodwin has pledged to donors that he will finish both races. If all goes well, he said he would consider raising the stakes next summer and running the Spartan Beast, a half-marathon with 30 obstacles.

“That would require a full year of training and preparation. But if people would sponsor that campaign, I would do it for Forester.”


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