Creating beauty through pain
For Deanna Molinaro, art has always been a refuge.
Molinaro, 24, was born with a rare genetic disease called dystrophic epidermolysis bullosa — commonly known as EB. People afflicted with the disease lack the proteins that bind skin together, which leaves their skin weak and prone to damage. Its victims experience massive blistering at the slightest touch and painful wounds that can take years to heal.
As a child, Molinaro’s condition meant that she couldn’t play sports or participate in athletics. She lost the ability to walk at 10 and has been in a wheelchair ever since.
Art became her sanctuary and her passion.
“My parents put me in art school at a very young age. I’ve always loved it,” she said. “I just get lost in the moment, really. It’s like an escape. It’s freeing.”
Today, Molinaro is in her third year of a visual and creative art degree at Sheridan College. She drives herself to Oakville in a white pickup truck that’s been specially outfitted for her. She dreams of becoming a costume director.
“That’s the direction I really want to go in,” she said. “I’ve always loved fashion.”
Despite her EB, Molinaro is positive about her life. She currently lives at home with her parents in a spacious Stoney Creek house that was renovated to accommodate her wheelchair. She has a space of her own on the first floor, including a bedroom, bathroom, and a newly renovated art studio.
“I wouldn’t change it for anything, because I’m quite happy with everyone and everything I have right now,” she said. “I have really good family and friends — it’s a really big support group.”
But Molinario’s life is full of challenges. Ninety per cent of her body is covered in sores, and she requires full-body dressing changes every other day (a painful process that takes up to four hours). Molinaro is on daily pain medication to help her cope with her ulcerated skin.
Molinario’s fingers are permanently fused together and covered in scar tissue that resembles the effects of a severe burn — another symptom of her EB. Molinaro had three surgeries as a child to separate them, only to adamantly refuse a fourth because the recovery process was so painful.
Because EB isn’t a well-known condition, people aren’t always sure whether it’s contagious (EB is genetic and can only be passed on from parents to children, though the blistering leaves sufferers prone to infections themselves).
It wasn’t easy going through school looking different, Molinaro said.
“Growing up was the big tough part of it. But you overcome. And you just accept how things are,” she said.
The most difficult part of having EB, Molinaro says, is the lack of accessibility. As an artist, Molinaro says she would love to visit galleries on James Street North — but many of the galleries she has tried to visit are inaccessible to someone in a wheelchair.
“Everything is in basements, or up stairs,” she said. “They’re all old buildings — but there should still be some solution.”
Even a night out with friends, something most 24-year-olds are able to do without a second thought, becomes a question of access. Molinaro’s friend once went to a bar to confirm whether it was accessible — after being assured it was wheelchair-friendly by staff — only to find that the entry was blocked by three steps.
“They said, “It’s accessible. The bouncers can lift the chair,” Molinaro recalls. “This chair weighs about 600 pounds. They’re not picking it up.”
But among the challenges, there are victories. Molinaro, a huge fan of the television show “Once Upon a Time,” will be showcasing art inspired by the program at an upcoming fan convention in Toronto. It will be the first time Molinaro has publicly displayed her art. She has also just launched a website showcasing her work (dinnovationart.wixsite.com/dinnovationart).
Her mother, Fran Molinaro, says her daughter goes through her share of ups and downs. No one else in their family, including Deanna’s younger sister Erica, has EB, though both her parents are genetic carriers of the disease.
“She got a bad gene from me, and a bad one from her dad, and that caused EB, in layman’s terms,” she said.
Fran Molinaro sees her daughter struggle with pain, both physical and psychological.
“I’m very proud of her — she fights every day,” Fran said. “Some days are really hard — she can’t do all of the things that a person her age should be able to do.”
Fran is the founder of DEBRA Canada — the Dystrophic Epidermolysis Bullosa Research Association — a nonprofit organization dedicated to promoting awareness about the disease.
Through her mother’s connection to DEBRA, Molinaro says she’s been able to act as a resource for other children with EB. As EB is a progressive disease — the average life expectancy for someone affected with this type of EB is 25 — Molinaro is among the oldest EB sufferers involved with the charity.
“If you ever have a change to meet someone with that much courage and that much resilience, you’re lucky,” said Tina Boileau, president of DEBRA Canada. “She’s definitely a good role model for EB kids to say “she can do it — I can do it too.”
For Molinaro, those connections are one of the most gratifying elements of her life.
“I’ve touched others that have EB,” she said. “I don’t think I would change that for anything.”