Sunday March 18th 2018

Event will help fund controversial MS treatment

Danny Goobie can’t leave his house to watch his young daughter perform in school plays. Emily, a nine-year-old brunette, has a flair for dancing and often wonders why her dad can’t go see her show off her moves on stage.

Goobie, who is confined to a wheelchair, has to explain to her that daddy’s sick and can’t come this time, but he wishes he could.

“She gets upset at times,” he said, sitting at the kitchen table of his Quispamsis home, bottles of pain killers and muscle relaxants in front of him. “They’re kids, they eventually get over it, but at the time it’s frustrating because you’ve got to sit her down and explain to her why I can’t go and why I can’t do it.”

Goobie was diagnosed with an aggressive form of multiple sclerosis nearly three years ago. He can’t stand up or get out of bed on his own. He hasn’t seen the upper floor of his home in almost two years because he can’t walk up the stairs. And getting out of the house is a major challenge, which leaves him isolated.

He’s tried different medications to fight the disease, which attacks the central nervous system and often disables stability, movement, vision and even memory, but it’s a losing battle.

Frustrated with the lack of progress, he’s now turned to a controversial and expensive form of treatment that’s not offered in Canada. Liberation treatment, developed by an Italian physician named Dr. Paolo Zamboni, is a surgical procedure that opens blocked or narrowed veins in the neck or chest of MS patients.

The treatment is said to open up blood flow to the brain and there have been reports of treated patients seeing their symptoms subside. Some have even been able to walk again after being confined to a wheelchair.

The Goobie family plans to attend a public meeting of MS patients and government officials on the west side this Saturday to learn more about the treatment and where they should send Danny to receive it.

Tim Donovan, a Fredericton Junction man who says he was liberated from his wheelchair after receiving the treatment in Albany, N.Y., is expected to come down to Saint John and share his story at the meeting.

“The doctors say it’s not working, but people who get it done, their symptoms are changing,” said Danny Goobie’s father, Brian. “There’s got to be something to it. Danny was on medication for two years, that was almost $20,000, and it didn’t do nothing. Absolutely nothing.”

Liberation treatment is still considered experimental in Canada and there hasn’t even been a clinical trial in the country to test the outcomes in treated patients.

The MS Society of Canada doesn’t condone the treatment and insists that scientists have to conduct more research to prepare for trials. The society warns on its website that complications stemming from the treatment could lead to heart attack, stroke, bleeding, bruising and infection.

In fact, the physician who came up with the treatment has warned MS patients not to have the surgical procedure, except in the case of clinical trials, according to NeuroSens, a medical news service. “Surgery is not recommended at this stage,” Zamboni reportedly said during a recent speech at an MS conference in Gothenburg, Sweden.

Danny Goobie said he’s frustrated that Canadian physicians refuse to offer the treatment and that he’s going to pay the price. The surgical procedure, offered in various locations across the globe including the United States, Mexico and India, can cost $14,000, depending on the location.

And then there’s the cost of airfare and accommodations for him and a family member who will have to travel with him. His uncle Leonard is organizing a fundraiser in Rothesay next week, when musicians, fiddlers, cloggers and maybe a line dancing group will entertain donors. There will also be a silent auction.

Becky Goobie, Danny’s wife, said her husband’s battle with MS has been difficult and has worn on the entire family. She said she has to do things with their daughter, like take her out and watch her perform on stage, that he would otherwise do. She said she’s almost like a single parent when raising Emily outside the family home.

“He gets frustrated and down a lot.”

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One Comment for “Event will help fund controversial MS treatment”

  • Sheran Oberholzer says:

    It should be mentioned that the procedure is minimally invasive It is also very low risk. It is only expensive because Canadians must leave their own country to have the procedure. If they could get it done in Canada it would only cost around $2,500.00 instead of the $10,000.00 plus in other countries.

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