A day in the life of someone with ALS

A day in the life of someone with ALS

Posted: Updated:
(WJBK) - You've probably seen or heard about the thousands of people doing the ALS Ice Bucket Challenge, raising millions of dollars to fight the disease. But this time for one Lake Orion family, the challenge is personal.
 
Wendy Sylvain's life with husband Brian started out picture perfect more than 20 years ago, and eventually their family photo would include three beautiful healthy children.
But on a trip to the beach just two years ago, something strange occurred.

"We went on vacation in April. She tripped through the airport; she tripped on the beach," says Brian. A few months later in July 2012 Wendy was diagnosed with ALS.

ALS attacks the nerves and all muscle movement is lost. Officially known as amyotrophic lateral sclerosis, life expectancy averages about 2 to 5 years from diagnosis, as you lose your ability to eat or breathe. But every person's ALS journey is different.

"In July we got the diagnosis. By the same November she was using a cane. In May, she moved into a walker," says Brian.

Then came the wheelchair. Seeing the disease progress in her mom, 19-year-old Rebecca, a nursing student at Grand Valley, has decided to stay home this semester.

"[She was] always athletic and on the go all the time, and it's just terrible to see her not being able to do any of that anymore and all the things that she loves ... it's terrible. I hate it," says Rebecca.

Even though Wendy now has to be fed, bathed and constantly cared for, she will never give up her role as mom.
 
"Every time I'm going anywhere, she's telling me do this, do that. But, I love it," says her son Justin Sylvain.

The day ends and begins with a lift to carry Wendy out of her chair and into her bed. It was donated by a nonprofit organization, Project Freedom, which helps people with disabilities live independently. It's that kind of support, the love from her family and generosity of others that gives Wendy hope as she now looks at life one day at a time.  

Wendy's Wonderful Warriors are having a fun charity event Sunday, September 7 at Christi's Bar and Grill in Lake Orion. All the proceeds go to ALS of Michigan and Project Freedom.

A Walk 'n' Roll walk for ALS is also coming up. You can talk part in several walks across Michigan.

Lake Erie Metropark in Brownstown - Sunday, September 14, 2014 at 11 a.m.
Hawk Island Park in Lansing - Sunday, September 21, 2014 at 11 a.m.
Kensington Metropark in Milford - Sunday, September 28, 2014 at 11 a.m.
Stony Creek Metropark in Shelby Township - Sunday, September 28, 2014 at 11 a.m.
Emerson Park in Midland - Sunday, October 5, 2014 at 2 p.m.

You can find more information on the Walk 'n' Roll on ALS of Michigan's website.
  • Download the FOX 2 Apps


  • FOX 2 News Five-Day Forecast
Powered by WorldNow
Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | New Terms of Service What's new | Ad Choices