Ryley Hlady says he is sick and tired of waiting for someone else to give him a second chance.
A 36-year-old single father of two, Hlady was diagnosed with Multiple Sclerosis a decade ago. Handed a suitcase of pharmaceuticals, he thought he would be injecting $22,000-a-year Avenox for the rest of his life while his body slowly deteriorated.
Then in November of 2009 Hlady saw a news report about the controversial Chronic Cerebrospinal Venous Insufficiency procedure and for the first time since he heard his diagnoses, he had hope.
He was watching the program while on the phone with a friend, who is also an MS sufferer.
“We were both kind of in tears watching it thinking ‘holy shit this could something big for us,’” he said.
That something big was a new idea by Italian doctor Paolo Zamboni who developed what has been called the Zamboni liberation procedure, which uses balloon angioplasty in certain neck veins to improve blood flow.
Some people who have travelled to places like Poland, Mexico and Costa Rica to have the procedure done have said they no longer have any symptoms of MS.
But not everyone has reported the same positive results. Some people who sought out the treatment reported no changes whatsoever.
There have also been reports of the procedure being fatal, but Hlady said based on the research he’s done all deaths have been unrelated to the procedure itself.
When the news broke, Hlady was hopeful that the federal government would start working toward getting the treatment up and running in Canada.
But after years of empty promises and false hopes, not much has been done and Hlady said he can’t wait any longer.
Not being able to play with daughters Reegan, 9, and Piper, 7, or the thought that one day soon he’d have to watch them from a wheelchair is frustrating when there is a possibility that he can stop the symptoms or get his life back altogether.
Instead, with the help of family and friends, Hlady is trying to raise $20,000 so that he can go to Albany, New York, to get the procedure done.
“There’s no guarantee that this is going to work for me but there’s no guarantee that it won’t either and I have two kids at home so I can’t sit around waiting for a government to make up their mind as to whether or not a dad can be a part of his kids’ lives,” Hlady said.
The decision hasn’t been an easy one. Hlady used to be an active part of the MS Society’s Read-a-thon, speaking at schools about his experiences.
But he was told not to talk about the procedure and instead stick to the script.
He’s also been challenged by the medical community.
One time a neurologist who had told him before that every MS patient in Thunder Bay could be treated for CCSVI in a month, later suggested that Hlady’s symptoms, which include everything from fatigue to blindness mixed in with a few near-fatal infections, were all in his head.
“Do you know how hard it was not to jump over the table and grab him by his little bowtie and smack him with his computer?” Hlady said. “He basically just took a dump on what my hope was.”
While he waits to raise the money, everyday living with MS is a mystery.
Some days it’s a struggle just to get out of bed.
Hlady, and Educational Assistant at Algonquin Public School, said even the few stairs he has to deal with at work sometimes is difficult to manage.
A softball player, he’s had to stop getting into the action and taken up the job of coaching instead because he’s afraid he’ll lose control of the bat when he swings due to the numbness in his hands.
“I’ve lost the ability to run. I can barely walk fast on a good day,” Hlady said. “Doing things quick is no longer an option. I can’t feel my hands anymore.”
He’s even lost the ability to write. Still, Hlady said he has to stay positive that the treatment will work.
“I think a large part of it is pushing through and going with the fact that you really have nothing better to do than to be hopeful because as soon as you quit you lose,” he said. “You know that you’re facing an impossible future and you had a chance to change it even a little bit you’d take it just to see if it would work.”
Hlady will go to New York in May if he can raise enough money in time.
