By Whitney Vickers
FAIRBORN – What started out as a Craigslist-purchased 1991 Chevy Camaro for Fairborn local Henry Williams to restore turned out to strike much deeper in the heart.
Affectionately named “Oscar” after its original green color, which matched that of a Sesame Street character, now sports new floors, fenders, lights, a hood, doors, wheels, an indigo blue pearl paint job, the Scleroderma Foundation logo, wings and matching pinstripes in honor of those lost and currently facing the skin-and-organ-hardening disease — including his own 12-year-old daughter, Emily Hoerner.
“The car was bought with the intentions of just putting a quick little paint job on it and having fun with it,” Williams said. “It turned into everything.”
Scleroderma, which combines two Greek words that literally translate to “hard skin,” is a life-long connective tissue illness that is considered an autoimmune rheumatic disease, according to scleroderma.org. The website said scleroderma ails an estimated 300,000 Americans and has the ability to not only harden skin, but internal organs too. Adults more commonly experience systematic scleroderma, while children more commonly experience a localized disease.
In Hoerner’s case, the fatty layer in her arms, legs and and ankles have been permanently stolen away by the disease, which impacts her joints and muscles. She also suffers from Ehlers-Danlos Syndrome, another disorder that impacts connective tissues, as well as asthma, epilepsy and biotinidase deficiency.
The diagnoses started in 2009-2010 with what was believed to be eczema.
“It’s a rarity to have all of them,” Hoerner’s mother and Henry’s wife Kimberly Williams said. “Her condition is compounded by each one. If she just had the scleroderma, it wouldn’t be as bad, but the fact that she has the scleroderma with Ehlers-Danlos hypermobility, it compounds the muscle issues. She wears out faster than other kids.”
What challenges Hoerner is being singled out and teased. She said the kids in school did not understand why she had to take it easy on her body, always being volunteered to be the scorekeeper during gym class instead of participating in the games. She said her classmates thought she was making it up until she came to school one day when she was in second grade with a walker.
What challenges Kimberly and Henry is having to tell their daughter that her conditions limit her physical activities.
“The hardest thing of being a parent with a kid with these disorders is telling them you can’t do something,” Henry said. “These kids keep getting called ‘special’ or ‘different’, but you can’t let them think that. I’ve had to tell Emily, ‘you are perfectly normal, you just have limitations.’ This (the car) is a way of showing her she can do something she wants when she puts her mind to it.”
Treating Hoerner was challenging at first before medical professionals found an avenue that would make the symptoms be more manageable. While she enjoys drawing, coloring and reading, particularly the “Harry Potter” series, Henry saw her take an interest in the car and started including her in the project.
“It was just a hobby then, but she seemed to get into it more and more as time went by and I was working on it,” Henry said. “She seemed to be doing a lot better as time was going by and we were doing this project. I’m not going to say that’s entirely what helped, but having something to do.”
He has about $19,000 invested in the car, initially dropping $1,300 on the vehicle, which was for sale as a result of a divorce. At one point, he even bought a second 1991 Camaro for its parts. But now, he said, you couldn’t put a price tag on that set of wheels.
“It was kind of like a dream, something for us to think of and dream about how it’s going to look,” Henry said. “You really don’t know until you bring it to life. It’s kind of priceless.”
The car has seen a number of local events, including Fairborn’s annual Downtown Fall Cruise and Car Show, the Cities of Fairborn and Huber Heights Fourth of July parade and car show events, the City of Lebonon’s Memorial Day car show for the Scleroderma Foundation, as well as Fairborn’s annual Stepping Out to Cure Scleroderma Fun Run and Walk.
Hoerner particularly likes riding it through the parades and passing out candy and scleroderma flyers.
As a result of its presence, Henry said the car has gathered more than $18,000 in donations for the Scleroderma Foundation, which will support a cure for the chronic disease.
“I got to spend time with my dad and work on something that’s just a lot of fun,” Hoerner said. “It’s just amazing to see it come together.”
Community members will have the opportunity to join the fight against scleroderma during the annual Stepping Out to Cure Scleroderma Fun Run and Walk Saturday, Aug. 6 at Community Park, 692 E. Dayton-Yellow Springs Road. It will include a 3/4 mile, one and a half mile or 5K route, a 50/50 drawing, family-friendly activities and a prize raffle.
Registration costs $20 and includes a t-shirt; participants may also order a kids T-shirt online for $5. All proceeds will benefit the Scleroderma Foundation. Registration for the event begins 9:30 a.m. the day of the event, while the walk/run kicks off 11 a.m. Individuals may also register by visiting http://www.scleroderma.org/site/TR?fr_id=3233&pg=entry#.V2GyBzX6O4E.
“She can’t do a whole lot of regular activities, running and playing, like other kids can,” he said. “This was something we could do as a family, go out to the root beer stand, have ice cream, enjoy it. Emily likes to cruise.”
And it will be Hoerner’s after she has a two-year degree and drivers license in her hands, with just one rule.
“No boyfriends,” Henry said. “I’m not having some boy drive the car I built.”
But that’s OK.
“Oh no, no,” Hoerner said. “They would never drive it.”
Reach Whitney Vickers at 937-502-4532.