Cre­at­ing beauty through pain

The Hamilton Spectator - - GO - EMMA REILLY ereilly@thes­pec.com 905-526-2452 | @Em­maatTheSpec

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.”

GARY YOKOYAMA, THE HAMIL­TON SPEC­TA­TOR

Deanna Deanna Moli­naro works on her art at her home stu­dio. An as­pir­ing artist and fash­ion de­signer, she cur­rently stud­ies vis­ual arts at Sheri­dan Col­lege in Oakville.

KATE CARR PHOTO

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