A Brighton family struggled with family outings. The gift of a van changed that

BRIGHTON — For the Vincents and their son Jace, going places was a difficult process because of Jace's need for a wheelchair.

Now, thanks to the organization Lori's Voice, family outings and errands will be much easier.

The Vincent family, of Brighton, on June 8 received a wheelchair-accessible van from the Lori's Voice. The nonprofit's co-founders, Lori and Dave Hastings, presented the van at Clock Mobility in Grand Rapids to help the Vincents transport Jace, who has spinal muscular atrophy, and his wheelchair.

"Having the van is literally just life changing and I've never seen (Jace) happier," mom Jordon Vincent said.

The van — the first given away by Lori's Voice — has an estimated value of $80,000. The donation was part of a new initiative the organization has started to support families who have children with various neuromuscular diseases across Michigan..

"We cannot transport his powerchair in our other van at all, so that was not possible," Jordon Vincent said.

Families with children younger than 21 can apply, like the Vincents, for a chance to win a wheelchair-accessible van. Lori's Voice plans to award a new van every three months.

"We know there's more need. That's why our charity is thriving, I should say. We're seeing more and more people in need. We get … sadly enough … we get emails and private messages and stuff. Hundreds and hundreds of sad stories. I mean, people who are taking care of a child and they have no finances to help them get what they need and it just breaks our heart because we can't help everyone," Dave Hastings said.

The Hastingses said they received 350 applications for the van giveaway, but knew the Vincent family was the right choice.

"It was a hard decision, really, because you see these other families who are so worthy and deserving of a van," Dave Hastings said. "It was unanimous. I mean everyone (on the board) raised their hand on them after we had seen their video. They have three children with spinal muscular atrophy and they have five kids, 7 and under, so it's a very busy mom. The dad was a veteran and so it was real easy to pick this family."

Justin Vincent, a veteran, works nights as a truck driver. Jordon Vincent is a stay-at-home mom to their five children.

In addition to Jace, 3-year-old Jameson and 2-year-old Jemma also have SMA. The couple's other children include Juliana, 7; and 3-month-old Jaydon.

Finding a way to help others

For the Hastingses, the creation of Lori's Voice, based in Coopersville, just made sense. Lori and Dave Hastings operate the charity through donations and volunteers. As a person with limb-girdle muscular dystrophy, Lori Hastings said she understands the trials that come with having a disease.

At the age of 12 she was diagnosed and by 20 years old she was wheelchair bound. The disease affects her arms, shoulders and legs. She said her doctor told her she would never have children, but the Hastingses have three children, and nine grandchildren.

"When we started the charity, we knew those hidden costs that other people don't see," Dave Hastings said. "Our heart and our passion is pure. We just see that need."

In addition to awarding vans, the nonprofit also supports families dealing with many neuromuscular or degenerative diseases by providing money for hospital visits, therapy sessions, lifts, remodeling homes to be ADA compliant, and even purchasing beach wheelchairs.

The group also previously gave money to help families work toward purchasing their own wheelchair-accessible van.

"It's been absolutely amazing to see the smiles we've been able to put on so many families and meeting so many special needs kids and their families, their superhero caregivers and those who adopt special needs children, so we've just been very blessed with the charity," Dave Hastings said.

Disease hits family multiple times

While Jace was diagnosed when he was older, his siblings Jameson and Jemma were diagnosed when they were born and they both participated in a clinical trial for gene therapy, which replaced the gene they weren't born with.

Jordon Vincent said both are doing great and people wouldn't recognize they have the same illness as Jace. Jace's younger siblings with SMA can walk and run.

"They don't need much of anything. It's night and day what the difference is between them. You would never know they had SMA unless we told you," she said.

Jordon Vincent said when Jace was born, doctors told her there was a 25% chance additional children might have SMA.

"We didn't know anything about it until Jace was diagnosed," she said. "We just learned to deal with it."

For many families with children who have SMA, expenses can be exceedingly high and insurance doesn't always cover medical costs.

"There's a lot of time that insurance companies will tell people 'no' when they should be telling them 'yes' and so we have a few people on our board that are good advocates for families, so as caregivers and as special needs parents, so many times they feel isolated and alone," Dave Hastings said. "I think what Lori's Voice has done is let them know that their not alone. That we walk alongside you and just make them feel like family."

For her family, Jordon Vincent said, they paid $1,000 for Jace's manual wheelchair, and about $125,000 every four months for Jace's shots. Her other children's gene therapy is about $1.4 million.

"It's scary and it's pricey and they need it. They cannot go without or if Jace does not get the treatment it could potentially be death for him. We're not risking that," she said.

Additionally, between supply chain issues with medical supply companies and the lack of coverage by insurance, Lori Hastings said, people can wait six months or longer for something they needed "yesterday," like a wheelchair battery.

"You can't just go buy a battery at the battery shop. This is a special wheelchair battery. Things have definitely tightened up with insurance companies and so that's why we do what we do too. We don't want these kids to jump through hoops. They need stuff. They can't wait 6 months," she said.

Jordon Vincent said Jace was ecstatic about the van.

"(Jace) says it all the time, like, 'I love my new wheelchair van or he'll tell everyone that he got a new wheelchair van. He loves it," she said. "He sits in the middle. I got him a little steering wheel because he likes to pretend he's driving it while he's in it, so yeah, he's on cloud nine when he's in it."

Vincent said she and Justin really want to be able to give Jace his independence and the van will allow them to do that.

Lori Hastings said that kind of difference is what her group hopes to provide for all its families.

"We want to continue to change lives," she said.

Seeking support for your family

People interested in seeking help from Lori's Voice or applying for an upcoming van giveaway can do so on the website, LorisVoice.org. The deadline for the next van giveaway is Sept. 20.

To qualify for entry, a child must be under 21 years old, a legal resident of the State of Michigan, and have a neurological or degenerative disease that results in significant and permanent mobility issues.

Contact Livingston Daily reporter Patricia Alvord at palvord@livingstondaily.com about news coverage.

This article originally appeared on Livingston Daily: Brighton family receives wheelchair accessible van to support son