When Steve Garrelts gathered his family over three years ago and told them he had ALS, Vannessa Garrelts – the youngest of Steve’s four children – was surprised and confused.
At the time, Vannessa was in eighth grade. She, like many people first learning about the disease, didn’t know anything about ALS – let alone what it stood for (amyotrophic lateral sclerosis).
“At first, I didn’t know what it meant because I had never heard of the disease,” said Vannessa, now a senior at Marian Central. “It took some time to really sink in. The reality of it didn’t hit me right away.”
Also known as Lou Gehrig’s disease, ALS is a nervous system disease that weakens muscles and affects physical function.
Steve Garrelts was diagnosed with ALS on April 16, 2014. He has since lost the ability to walk.
Daily tasks most people take for granted can be difficult or downright impossible.
“For one person, it can affect their breathing, but for another person, it can affect how they walk,” Vannessa Garrelts said. “One thing that a lot of people don’t know is how much it really affects the person in their everyday life. Something as simple as picking up a pencil or hugging your brother or sister. It’s a struggle every single day.”
The average life expectancy with ALS is two to five years from the time of diagnosis.
The Garrelts remain hopeful.
Steve still runs the family business, Garrelts and Sons Plumbing, and is at all of Vannessa’s high school basketball games.
On Friday, when Marian Central hosts Crystal Lake South in a nonconference girls basketball game at Landers Pavilion, the Hurricanes and six other teams will come together to fight ALS and raise money for the ALS Therapy Development Institute.
Evelyn Garrelts, Steve’s wife, and Vannessa are co-running the fundraiser, called “Shooting for a Cure for ALS,” starting at 5 p.m. at Marian. Other teams participating include South, Crystal Lake Central, Woodstock North, Marengo, Cary-Grove and Johnsburg.
Some of the participating teams are shooting free throws and gathering donations for each free throw made. The Hurricanes shot free throws for two hours over the weekend and tallied 3,336 total shots. Marian’s boys basketball team also joined in.
Cary-Grove is supplying baked goods for a bake sale Friday, and Johnsburg has made “Shooting for a Cure” T-shirts that will be worn by players and coaches.
Many of the area team’s not playing that day also will be present. Those participating teams not present will wear their shirts across McHenry County.
A 50/50 raffle and assorted baskets available for purchase in a silent auction also will be part of Friday’s fundraiser. All of the money raised will go directly to ALS TDI in hopes of finding a cure for ALS.
Marian Central girls basketball coach Anthony Powe approached the Garrelts family with the idea. Evelyn Garrelts said the support for her family and the community has been overwhelming.
“It’s overwhelming in a good way,” Evelyn Garrelts said. “Our hearts are full, and we’re hopeful that we can be a part of something that can help so many people that aren’t being helped right now.”
ALS isn’t an incurable disease, it’s just an underfunded one, Evelyn said. Friday’s fundraiser is about raising awareness for ALS, and providing additional funding for research and medicines.
“It affects everyone differently, so it’s hard to say what’s working and what’s not working, but what we do know is that he’s beating the odds right now,” Evelyn said of Steve’s fight. “If we can help someone do the same thing and live and fulfill their life to the best that they can each and every day, that’s our goal.”
Vannessa said Steve, who led a very active lifestyle – from four-wheeling to boating to fishing – before his diagnosis has been an inspiration to her and her entire family.
Evelyn said Steve “still has the same wit to him.” He’s able to talk and eat very well, she said.
“He’s definitely someone I look up to,” Vannessa said. “He’s a pretty unbelievable guy, even though he has gone through this struggle. He’s been so strong in days where I’m struggling with it, even though I’m not even the one who has the disease. I just got to look toward him and he has a smile on his face.
“He’s definitely gotten us all through it, even though he’s the one that really has the cross to carry.”
Vannessa said her family – brothers, Stephen, 22, and Marcus, 19, and sister, Gabriella, 21 – are blown away by the support.
“It’s going to be a packed gym,” Vannessa said. “It’s going to be an awesome atmosphere. I can’t wait. The support everyone’s showing my family has been amazing. To see so many people care so much, it makes it that much better.”
Donations also can be made directly to ALS TDI through the “Shooting for a Cure for ALS” fundraising page.