He needs the medical care found in St. John's. For more than a year he's faced roadblocks

A young man from Newfoundland is hoping a move to St. John's will help him gain more independence, enable him to one day contribute to his family's finances and get access to better medical care — but for more than a year those goals have been stymied.

Nathan Pointon, 21, has Charcot-Marie-Tooth disease — a progressive, degenerative disease involving the peripheral nerves. He hopes a move to St. John's will solve multiple problems.

"Other than the obvious, like medical help … it's more the social aspect because, again, around here if you can't go outside or anything like that, it's very isolating," Pointon told CBC News.

Pointon was first diagnosed with Charcot-Marie-Tooth disease when he was in junior high. It began with numbness of the toes, then affected his legs up to the knees. Over the past couple years, he's developed numbness in his fingers and arms, and now has to wear hearing aids because it's spread to his ears.

"Walking is getting harder because whenever I'm walking for too long, which might I add is only like 10-15 minutes, it feels like my ankles are going to break," he said.

Pointon and his mother Angela Newhook made the decision to move based on advice from doctors more than a year ago.

Newhook says he'll get better medical care in St. John's.

"So that [Pointon] can get set up with a neurologist out there because it's mainly a neurologist that keeps track of how it's progressing, any additional testing, stuff like that," Newhook said.

WATCH | Nathan Pointon is facing challenges in care:

A 21-year-old with a rare disease is moving to St. John’s for medical care. But more obstacles are in the way

1 month ago

Duration 3:03

Nathan Pointon and his mother are moving from Botwood to St. John’s. Pointon has a rare, degenerative nerve disease and until he turned 18, he was connected to the Janeway. But now, access and care are less certain. The CBC’s Troy Turner reports.

When the decision was made, they were put on a Newfoundland and Labrador Housing Corporation wait list but even listed as a "medical priority," that list can come with a two-year wait.

In a statement, Newfoundland and Labrador Housing said from April 1, 2024 to March 31, 2025, there were 2,498 people on the wait list. About 1,300 people came off the wait list during that time, including 860 in the Avalon region.

Newhook and Pointon began the search for an apartment themselves but it proved to be a struggle to find accommodations.

Pointon says he would see a listing, send a message and explain his situation.

"I would get messages back within an hour saying, 'It's gone.'"

Then, while looking for a place, Newhook suffered an injury to her ankle, and it put her off work for six months. Now, with accommodations finally arranged, she wasn't  able to work.

"It looks like we're going to have to go with the most cost-effective method, which is the U-Haul, which is still going to range between $1,500 to $2,000," Newhook said.

"I find it very hard asking for financial help. But even his doctor is like, 'Do a GoFundMe.' So we've set up a fundraiser."

Still, they plan to move to St. John's in June.

Pointon says he's looking forward to a day when he can contribute financially to their household, but his mom says her priority right now is to improve his quality of life.

"He's very hard on himself," Newhook said, adding that in addition to Charcot-Marie-Tooth disease, her son has also been diagnosed with high-functioning autism and ADHD as well as facing other health struggles.

"I think that's what I look forward to the most, is seeing Nathan strive. And it's going to be so good for his confidence."

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