WALDO, Maine — Carol Kelley — mom, chauffeur, primary care provider, physical therapist and social director for her profoundly disabled 24-year-old son, Michael — packs a lot into each carefully managed day.
But in the blink of an eye this August, something happened that slowed her family down and made their lives — complicated at the best of times — a lot more difficult. That’s because the Kelley family for years depended on their Ford E-150 van, nicknamed Tank, to safely transport them around the state and the region. When the van was totaled last month, Kelley and her family were left scrambling to come up with a replacement.
“We just paid it off. We wanted to use it until the wheels fell of it,” Carol Kelley said Saturday. “We’ve been from Baxter State Park to Fenway Park, up Mount Washington — we went everywhere. You’ll have the naysayers who say if he’s that disabled, he should just stay home, but what would be the point? He needs the socialization. … He’s a young man who is stuck in a body that won’t work.”
Michael Kelley has a very rare genetic syndrome, the triplication of chromosome 17. It comes with a host problems, physical and otherwise, including scoliosis, partial paralysis and more. His thin, twisted body cannot sit upright any longer, and he cannot push his own wheelchair. But he’s chatty and deeply interested in NASCAR, his brother’s sports teams and his family’s rescue animals. His bedroom walls are plastered with signed photographs of his favorite sports stars, and he enjoys the outings his mom plans for him.
On Aug. 17, Michael’s father, John Kelley, was driving the the van home on Route 137 when a car suddenly pulled out in front of him. He swerved out of his lane to avoid a T-bone collision and ended up crashing the van into a set of concrete barricades, hitting only the front corner of the other car. Both drivers were OK, but the vehicles were wrecked in the crash. Michael was distressed to learn Tank would drive no more.
“Totaled,” he said over and over again Saturday while listening to his mother recount the story of its demise.
The 2005 van had 187,000 miles on it, and its book value was less than $5,000. That’s what the insurance will reimburse the family. But the vehicle’s value to them was much greater. They are looking for a replacement mobility van with a wheelchair lift so Michael again will be able to ride in some comfort. Right now, the family is using Plan B — a minivan — but they will need something more specific to Michael’s needs before he has major hip surgery later this fall.
A family friend said she heard of a van that might work, and Carol Kelley said it does to a T. The 2012 Toyota Sienna is equipped so Michael safely could be lifted into it while sitting in his wheelchair and be able to safely ride in the front, which he likes best. It only has 37,000 miles, and the fuel efficiency is much better than what they had with Tank. The problem? It costs $25,000. That’s a lot more than the family has on hand right now, so Carol Kelley is asking people for a little help with the purchase.
“Michael is such a community-minded person. In his mindset, he’s a giver, but he’s not able to give,” she said, adding the family has done what it can to help others in the past. “We’ve never asked for help before. I am hoping people will help us.”
Because Mike’s disability is non-categorized, it has been a struggle to get medical or other support from state government. The Kelleys have needed to save up to pay for things like ramps, the van, strollers and wheelchairs. Mike has been on waitlists for years to see a trained physical therapist and to be placed in a daytime care facility. Until then, his mom spends her time caring for her son.
“Caring for a disabled family member is hard, yet rewarding,” Kelley wrote on her online fundraising page. “Being able to take trips is one thing we all can do. … Mike is just a kid, a young man, living day by day. He didn’t choose this. Rather, he was chosen.”
To help the Kelley family get a replacement van, please visit the online fundraising website at gofundme.com/eua5tc.