Progress being made in the fight against ALS
Published Saturday, September 21, 2019 5:07PM EDT
For more than two decades, Mario Vella has been fighting Lou Gehrig's disease, and defying the odds.
Only five per cent of people with ALS live more than 20 years after diagnosis.
"It was when I had my daughter, I swore I would do everything in my power to fight for her and my parents and the girls," says Vella.
On Saturday, Vella and his care workers were taking part in the annual walk for ALS at London's Springbank Gardens.
This week was extremely difficult for him. His long-time friend and fellow ALS fighter Steve Barber lost his battle with the disease after 16 years.
His personal care attendant Shae Book was with him when he got the news. "I didn't know Steve... but I started crying, because I saw him crying," says Book.
"It hit close home to home, because he was one of the last ones left of the long surviving people."
From those who have beat the odds for years, to someone hoping she can do the same, St. Thomas native Jackie Pasch was diagnosed just under a year ago.
"I have family history and it's not that long. I'm just hoping on the extreme end," says the 55-year-old mother.
Doctors and researchers say they are making progress in understanding the basic aspects of the disease.
"Identifying key players and key proteins that misbehave, that's the first step to finding a cure," says Dr. Martin Duennewald of the Schulich School of Medicine at Western University.
This disease is so demanding, that even though Vella has a strong group of people around him, they are in need of more help.
Just three days ago, a job posting went out for a personal care worker to join Team Vella. He says these women have helped him live for 23 years with ALS.
"It's easy when you have a good support team it makes it a whole lot easier," adds Vella. "I have a bunch of people around me who love me.