"He had ALS for 3.5 years. It wasn't part of our plan to be forty six years old being a widow raising two young boys, but we're figuring it out," she said.
On Thursday she joined Deb Wehrlin at Burlington's waterfront ahead of the Lake Champlain Maritime Festival. The women set up a silent auction benefiting the battle against ALS, which also took Deb's husband Jeffrey.
"He couldn't speak or swallow or breathe," Wehrlin said.
Every day an average of 15 people are diagnosed with ALS. It’s also known as Lou Gehrig's disease. The disease affects nerves in the brain and spinal cord, and often leads to death within a few years.
Caring for those with the disease is costly- motivation for the South Burlington women to raise money during the festival this weekend.
"It gets very expensive to renovate your house or have wheel chairs," Smith said.
This is the fourth year that the ALS auction has been going on at the Maritime Festival, and organizers say it's not just about the money. It’s also about the platform, and reaching so many more people that may not otherwise know about ALS.
Funds collected during the festival will be given to the Vermont Walk to Defeat ALS in September.
"It's about living, and it's about taking whatever time you have and living it to the fullest, and making sure you cherish every moment,” Wehrlin added.
That’s exactly what Smith and her boys do on a daily basis.
"We carry the love that we had for him," Smith said. Smith and her sons will also be taking part in the Spartan Race in Killington. That's also in September, and will benefit ALS.
Jim's House, an organization that benefits those suffering from ALS in Vermont, is also highly regarded by Smith and Wehrlin. Learn more about it.
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