Student raising money for wheelchair-accessible van

ST. CHARLES – After high school, Drew Soule told his parents he needed to get out on his own.

While that might seem natural for a teenager to say, for Soule, it was a bit more complicated.

Soule was born with spinal muscular atrophy, an uncommon neuromuscular disorder that, over time, causes atrophy of the entire muscular system. It has left Soule unable to walk, feed, bathe or clothe himself, but with limited use of his arms, a motorized wheelchair and a wheelchair-accessible 2005 Dodge Caravan, he’s traveled the country, making friends wherever he’s gone.

Unfortunately, the 23-year-old’s independence is in danger of rotting away – just like his trusty “little blue beast.”

In November, the van’s transmission went out and Soule was told with 150,000 miles and rust damage beyond repair, he needed to replace the van immediately.

With the encouragement of friends, he began a fundraising campaign through GoFundMe titled, "Help me empower! New handicap van." In the past three months, he has received donations from nearly 300 people totaling almost $23,500, according to his web page.

“I hoped for the best … and it took off pretty far,” Soule said.

On his own

After high school, Soule, who grew up in St. Charles, enrolled at the University of Illinois at Urbana-Champaign, using his social networking skills to hire personal assistants to help with daily living tasks – things his parents and his able-bodied twin, Bryce, used to assist him with.

“I saw it as the opportunity for me to start something new and live independently away from home and start to write my own chapter,” Soule said. “I had to create my own system and learn how to hire and what sorts of things I was looking for when I interviewed people. It was all on my own.”

Today, the senior plans to graduate and enroll in graduate school to study industrial relations and human resources – fields he has mastered while training others to assist him with daily living activities. He also hopes to formulate public policies to preserve nature for future generations.

The pursuance, however, depends on his ability to travel – and air travel is out because airlines usually break his power wheelchair, leaving him stranded until it is fixed, he said.

“If I’m able to get a van, that will open the doors for employment and internships, things that will allow me to write my professional life, post-graduation,” Soule said. “It will allow me to get to medical appointments and job interviews.”

Although the Illinois Department of Human Resources has helped pay for Soule’s personal assistants, neither the state nor insurance will fund a new accessible van.

Thus, GoFundMe seemed like a viable option.

“Drew has a huge network of friends; so many people around U of I alone, and in the music festival scene, he has a pretty big network,” said Mick Bunten, 22, Soule’s college pal who has traveled extensively with him. “[We thought], if we can tap into this, that’s a pretty huge network.”

This summer, Bunten and Soule spent a month on the road visiting national parks on their way to and from the West Coast.

“After the road trip, we had a good story behind [the GoFundMe campaign],” Bunten said. “We showed people what we did with the current van and why it’s no longer going to work. That, coupled with Drew’s desire to go to school, [shows the van] is not just for fun. We figured we had something real on our hands.”

Soule wasn’t sure how far the campaign would go. To his surprise, he’s raised more than half of the $45,000 it will take to buy a replacement 2012 Dodge Caravan.

“I didn’t even think it would get to $10,000,” Soule said. “Through small donations from my friends and social networks, we raised about $10,000. Then a month ago, we got a $10,000 anonymous donation. I still don’t know who did that or where it’s from. That boosted it up to $20,000, and we were like, maybe this has some potential to actually work before winter comes and I’ll be stuck rolling around campus in my wheelchair.”

Bunten wasn’t quite as taken aback by the support Soule has received.

“I wasn’t really convinced he would get the full $45,000 he needs, but at the same time, I’m not surprised that it’s gained some traction,” he said. “Anyone who knows Drew knows he’s the most personable, selfless person.”

Pushing forward

Soule’s campaign seems to have reached its peak. Now, he and Bunten are hopeful word will spread so that he can buy a van before he heads back to Champaign.

“We’ve put a lot emphasis on saying if you can’t donate, sharing [his story] is just as important,” Bunten said.

He hopes Soule can raise the entire $45,000, noting he has a bright future.

“He’s definitely a people person that really cares about issues he’s involved in,” Bunten said. “He wants to pursue environmental policy. He just likes being out camping, spending a lot [of time outdoors]. For someone with his limitations, to get out and do that kind of stuff, he’s not just saying that [he’ll pursue policies]. If he finds a job in [public policy], he will do very well.”

To donate or learn more, visit www.gofundme.com/helpdrewdrive.