Parents plan trip of a lifetime for boy going blind

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This article was published 24/03/2025 (207 days ago), so information in it may no longer be current.

A Manitoba family hopes to give their four-year-old son a cross-Canada vacation to remember — while he can still see.

Four-year-old Oaklin was diagnosed last year with a rare eye condition that is causing him to go blind.

“It’s hard, for sure,” said David Piec, Oaklin’s father. “It does feel like there’s kind of a black cloud hanging over us.”

The boy began going for genetic testing after his family, who live in Anola, noticed vision problems when he was 18 months old.

He was eventually diagnosed with autosomal dominant neovascular inflammatory vitreoretinopathy, or ADNIV, a genetic condition that affects the eyes.

Oaklin’s ophthalmologist told the family his is the only known case in Canada.

Before the boy loses his sight, his parents are determined to show him Canada’s vast beauty. They want to buy a motorhome and take Oaklin and his six-month-old sister, Everly, to see the Rocky Mountains and Niagara Falls.

“I would just hate it if down the road, somebody talks to him and is talking about mountains, or a waterfall, and he has to say, ‘I don’t know what that is, I’ve never seen that before,’” said Miranda Piec, Oaklin’s mother.

The trip would be a welcome distraction for a family that has dealt with so much over the last few years.

“After (the diagnosis), honestly, all I remember is a lot of crying,” said David, fighting back tears. “My wife and I would have these episodes where we would just both break down.”

Doctors say it is possible the condition could also cause Oaklin to go deaf. His vision problems are already evident.

“We can see it in his day-to-day, when he bumps into things, or trips over things,” said David. “His peripheral vision is pretty bad, so he will regularly walk over things or trip into things.”

Due to the rarity of the illness, supports like counselling, or even Facebook groups, are virtually impossible to find.

It’s forced the couple to be strong for their son, and themselves.

“She (Miranda) is the only other person that knows what I’m going through, and vice versa,” said David. “There’s no one else that we can reach out to, or talk to, that understands.

Every four weeks, the family travels to Winnipeg for Oaklin’s amino suppression therapy through IV, which slows the inflammation in his eyes.

Oaklin is also a frequent patient at Children’s Hospital, where he receives steroid injections in his eyes if inflammation is present.

The boy also has his hearing tested twice a year and is on a waitlist for occupational therapy to help with his motor skills, which have been impacted.

Dr. Ian Han, director of retina service at the Department of Ophthalmology and Visual Sciences at the University of Iowa, said some people with the condition are mildly impacted while others have severe issues.

“Within our families… we have some kids who lose vision very early on, even with the best treatment available… then you have other family members who are 80 years old and see really decently well,” said Han.

The U of Iowa is one of the world’s largest centres that studies how inherited diseases impact the eyes. He said members of four families (about 65 people) have been diagnosed there with the rare disease since the 1960s.

“The most important part of this condition is the diagnosis,” said Han. “Because it’s so rare, that it’s easy to not know what’s going on.”

He said most genetic conditions are “autosomal recessive,” which means genetic variants are needed on both sets of the parents’ DNA. Autosomal dominant conditions, like ADNIV, only require a variant from one set of DNA. For this reason, there’s a 50 per cent chance of inheriting the disease.

“He’s not alone in this,” said Han of Oaklin. “He’s rare, but not alone.”

A family member started a GoFundMe to help raise funds for the cross-Canada adventure. More than $24,000 had been raised as of Monday.

“It’s been really nice, and overwhelming to see the support from people,” said David.

fpcity@freepress.mb.ca