THUNDER BAY – Six months ago, Tom Mustapic’s life was torn upside down after being diagnosed with amyotrophic lateral sclerosis.
Mustapic is a long-time administrator with the Thunder Bay Catholic District School Board as well as a highly respected high school basketball coach and the revelation shocked his friends and family.
In half a year the disease, which does not have a cure and on average comes with a two- to five-year life expectancy, has left Mustapic in need of a wheelchair to get around most days.
The tragic news hasn’t stopped his family and friends from rallying around him.
Dozens, including the Lakehead University men’s basketball team, on Saturday showed up at St. Ignatius High School for the annual Walk to End ALS.
And they brought their wallets too.
As of Saturday morning, Mustapic’s supporters had donated more than $42,000 to this year’s event, 40 per cent more than the walk’s $30,000 goal.
Son Matthew Mustapic said the outpouring of support is encouraging.
“When we first started this off, we would have thought a few thousand dollars and we would have been thrilled,” he said. “But all our friends and family came together and everybody just wanted to donate and offer their support.
“It really just means a lot to us, knowing that people are there for us and people are supporting us – and just being able to raise awareness for the event, because a lot of people don’t really know what ALS is.”
The younger Mustapic said his family was in the same boat when his father’s diagnosis was made.
They’ve learned a lot in the past year.
“He’s really having trouble with his mobility and his daily activities. It progressed really quick, but he’s still hanging in there and we still have hope and we’re still keeping our spirits up.”
Better known by some as Lou Gehrig’s Disease, ALS gradually paralyzes people as the brain becomes unable to communicate with the muscles of the body, eventually leading them to lose the ability to perform simple tasks like walking, talking, eating and swallowing. It usually affects people between 40 and 60, but it can develop at any age.
Treatments are few and far between and death from ALS is a certainty – though some, like physicist Steven Hawking and former NFLer Steve Gleason, have outlived the two- to five-year life expectancy after diagnosis.
Unfortunately, Jerry Nicholl’s wife Judith wasn’t able to defy the odds.
She was diagnosed three-and-a-half years ago and died this past March.
Hearing organizers of this year’s walk had raised $80,000 in total, well beyond their goal, put a smile on his face.
“That is absolutely amazing,” Nicholls said. “Everyone has stepped up and are now realizing the incidence of ALS is increasing throughout North America and here in Thunder Bay. People are becoming more aware of ALS and the impact it can have on not only the community and individual family lives.
“My heart is overjoyed to see the number of people out here and the amount of money that has been raised.”
At present there are about 19 people in the city living with the disease and about 25 total in all of Northwestern Ontario.
Sixty per cent of the money raised from this year’s Walk to End ALS stay in the community to support those living with ALS, while 40 per cent goes to research.
