Original Source: Big Rapid News Pioneer
BOON — Surrounded by friends and family, Alexander and Michael Mattzela celebrated the delivery of their new wheelchair-accessible van Wednesday, June 11.
The boys live in Reed City with their mother Tabatha; father Michael, who is the Osceola County Road Commission manager and sister Elizabeth, 11. They were diagnosed with Duchenne muscular dystrophy in 2015. Their mother, Tabatha Mattzela recounted finding out.
“I noticed my one son, Michael, the older one, he had a slight limp, and I took him to the pediatrician,” she said. “They couldn’t figure out what was wrong with him.”
Eventually, on Aug. 24, 2015, the family went to a neurologist, had blood work done, and learned that Michael, now 15, had creatine kinase levels at 50,000. The normal range is 100 to 150.
“Our world pretty much ended then,” Tabatha Mattzela said. “We spent the next couple of years really grieving.”
The disease is genetic, carried by females and transmitted to their sons. Tabatha Mattzela was unaware she had the disease, which according to the Cleveland Clinic, causes skeletal and heart muscle weakness that gets worse with time.
There’s currently no cure, so treatment involves managing symptoms and improving quality of life. Ultimately, Tabatha Mattzela said, both of her sons will pass away as young adults.
“There’s a lot of great research out right now, but nothing is 100%,” she said. “They will die in the early 20s.”
At the moment, the boys can walk, but only for increasingly smaller periods of time. They will eventually lose all ability to walk.
“I’m trying to give them a full life and enjoy every possible second and just let them enjoy being kids,” Tabatha Mattzela said.
Part of that effort is getting the new van, as the family’s previous vehicle had broken doors, high mileage and couldn’t transport the boys’ power wheelchairs. The new van includes a wheelchair lift and spacious interior.
The purchase was made possible thanks to the Jett Foundation, which aids families whose children are impacted by Duchenne muscular dystrophy.
They put up half of the funds needed, $40,000, but the Mattzelas needed to raise funds to match that. They did, and rather quickly, too, Tabatha Mattzela said.
“I applied for the grant, I didn’t think I’d get it, and we found out in January that we actually had gotten it,” she said. “We were just beyond thrilled.”
Tabatha Mattzela then contacted her friends at Fenner Farms in Boon. They have a following on social media, and made a video asking for support for the Mattzelas.
“We put that video out, and the community just really responded,” Tabatha Mattzela said. “People all over the United States gave money.”
Some gave $25 dollars, while others gave up to $10,000. She said they could not have gotten the van if it wasn’t for the community.
“We just had some amazing support shown to us and our family, and we’re just really grateful and blessed,” she said.
Upon receiving the new van, Tabatha Mattzela said she was filled with emotion.
“I was pretty much in tears just for the fact that people care so much about my boys and their future, and that I can actually continue to give them independence, and give them opportunities because they love to go places,” she said.
She said the family couldn’t even go to the grocery store because Michael Mattzela was unable to walk for that long. He ended up having to stay in the car.
“Now, he can ride in his power chair, he can go into the store, he can have dignity,” Tabatha Mattzela said. “I can give him back some of what he’s lost.”
Michael Mattzela said he likes the new van, and he was looking forward to its delivery. He is also looking forward to all the trips they will be taking.
“Maybe like a long trip,” he said. “Out west or something like that.”
Tabatha Mattzela said the boys were going to a church camp in Cedar Lake as their first outing in the new van. They were then going to another summer camp for those with muscular dystrophy in Port Huron.
“Then we’ll probably be going down to Grand Rapids to the zoo and the museum,” Tabatha Mattzela said. “The boys love going to museums and zoos and so forth, and we’ll be able to actually do it this time, and not be so limited.”
Both he and Alexander Mattzela, 14, thanked the community, and their mother urged others to continue supporting causes like theirs.
“I just want people to know it makes a huge impact and difference when you reach out, even with the $20, and help somebody else,” Tabatha Mattzela said. “If you weren’t able to help with this particular project, find a project to help with because there’s people like us who love this, appreciate it, and are just overwhelmed and it actually changes our world. That $20, $30, $40 can really change someone’s world.”
