Community raising funds for man's MS treatment

Aaron
Aaron Beswick
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People Hopes pinned on untested procedure in Poland

Trent Byrne wants to walk his daughter down the aisle someday. "And dance with her when she's old enough." But she's five years old and he has multiple sclerosis (MS).

Deep inside Byrne's body, the coating of nerve cells is being eaten away and the electrical signals that travel from his brain, telling his body what to do, don't always work. It's getting worse.

Conche - Trent Byrne wants to walk his daughter down the aisle someday. "And dance with her when she's old enough." But she's five years old and he has multiple sclerosis (MS).

Deep inside Byrne's body, the coating of nerve cells is being eaten away and the electrical signals that travel from his brain, telling his body what to do, don't always work. It's getting worse.

"If I wait another five to six months I might end up in a wheelchair, and I don't want that."

So the Conche native is taking a chance on an experimental therapy that's not offered in Canada.

The "liberation treatment" was developed by Italian doctor Paolo Zamboni. It involves using stents to prevent the constriction of veins leading to the brain.

"(Zamboni's) initial research related to why the location of lesions in the brains of MS patients were all venocentric," says website http://liberation-treatment.com, which promotes the new treatment.

"(Zamboni) rationed that there must be a link between the veins and the occurrence of these lesions. And with further study he found that the brain damage was all counter to the flow of blood, meaning that it likely had something to do with the drainage of blood back to the heart."

But the treatment hasn't been thoroughly studied.

While equipment to check the drainage of blood is available in Canadian hospitals and stopping the shrinkage of veins with stents is also common, therapies need to be tested and proven by clinical trials in Canada before they are approved and paid for.

The Multiple Sclerosis Society of Canada is holding out on jumping behind the treatment until after further study - although on June 11 it announced $2.5 million for more clinical research.

"If it is approved, Mr. Speaker, and it is shown to work, we will be very open to funding it and to providing the testing," Health Minister Jerome Kennedy recently told the House of Assembly when asked by Liberal Leader Yvonne Jones why the liberation treatment isn't available in Newfoundland.

"Again, it is my understanding that as of this point in time, that the original research has not proven to be reliable and that further research is being carried out to determine whether or not the original premise is correct."

But when Byrne stares into the coming months, he sees life in a wheelchair and loss of control over his own body.

He's not going to wait for clinical trials.

And Conche has got his back.

The community, through the French Shore Historical Society (FSHS), has begun a campaign to raise $15,000 for Byrne to travel to Poland, get tested to see if the flow of blood to his brain is being blocked and if so, to have stents put in the constricted veins. The hope is to slow or stop the progression of MS.

That campaign began with a relay walk from Conche to Roddickton on June 19 which raised $5,000. On July 15, the Bit'n Pieces Café will donate all proceeds to Byrne's treatment and a talent show is planned for late July.

"We're also trying to get our message across to the health-care system and government that MS patients have the right to at least be tested," said organizer Phyllis Byrne, Byrne's aunt.

"He's trying to live as normal a life as any other human being."

Like many people with MS, Byrne's symptoms began in his late teens and continued into his early twenties.

His vision blurred at times, he had weak spells and he couldn't feel the side of his face while shaving.

After years of inconclusive tests, Byrne was partway through a business administration diploma when he was diagnosed.

"I was so young, I didn't know how to handle it. After I researched it and learned what happens, I was upset."

But he soldiered on, finishing his course and returning to Conche to work with the FSHS. Later came a job with the Department of Education, and Brianna, his daughter.

"It's so hard not being able to do things with her - go for long walks, chase her around the house," said Byrne.

"I accept that I got it and I try every day not to get discouraged. At times I don't want to get up, don't want to go to work. But I've got a lot to live for."

He credits his girlfriend, Crystal Fitzpatrick, parents Gary and Selina Byrne and Brianna with keeping the fight alive in his heart.

"It's beyond words how thankful I am for all this fundraising, to all the people of Conche and surrounding areas. It means so much to me."

Byrne flies to Poland on Aug. 11.

Organizations: French Shore Historical Society, Multiple Sclerosis Society of Canada, Department of Education

Geographic location: Conche, Poland, Canada Newfoundland Roddickton

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