Young artist draws attention to rare disorder

Saanich's Abbey Edwards will display her work at Goward House to raise awareness on Gorlin–Goltz syndrome

Sarah Edwards, left, stands with her daughter Abbey and FUN Society youth programs co-ordinator Roxanne van Gemert. The artsy eight-year-old is putting on an art show as a passion project with the FUN Society to raise money and awareness for Gorlin–Goltz syndrome, a rare disorder that affects Abbey’s skin, eyes, nerves, bones, hair and other body systems.

A local eight-year-old girl with a rare medical condition is hosting an art show at the Goward House this Saturday, to raise money and awareness to fund research on her disorder.

Abbey Edwards has Gorlin–Goltz syndrome, a condition that can cause defects to multiple body systems such as skin, eyes, nerves and bones. She has undergone extensive treatment, but there is currently no known cure.

“It’s an ectodermal dysplasia, which means her X chromosome mutated so it affects her skin, her bones, her immune system, her organs, her teeth, her eyes,” said Sarah Edwards, Abbey’s mother. “She loses her hair, her bones break really easily. If she gets a cold, she pretty much gets hospitalized because it will turn into pneumonia or some kind of respiratory illness.”

Sarah said Abbey has about 15 doctors she sees regularly to keep track of her disorder, including an endocrinologist to strengthen her bones. Gorlin–Goltz syndrome affects one in 50,000 in the general population.

In an effort to educate others about her rare condition, and to showcase her budding art skills, Abbey has decided to put on an art show as her passion project for the FUN Society (short for Friends Uniting for Nature), a Victoria-based group that puts on environmental stewardship and leadership summer camps. She has had tremendous support from her mom, Sarah’s partner Megan Creran and the FUN Society in organizing the event.

“We ran into the FUN Society at the Oak Bay Tea Party last year,” said Sarah. “They offered Abbey a spot in their camp and that’s where it all started. She talked about what she wanted to focus on and she wanted to raise money to get more research on her disease.”

“There’s a passion project incorporated into each week so each kid can focus on whatever they’re passionate about,” said Roxanne van Gemert, youth programs co-ordinator with the FUN Society. “Abbey’s been working on this art show for almost the entire school year, and it’s just so exciting.”

The artsy eight-year-old already has 15 pieces in the show – “I counted just yesterday,” she said enthusiastically.

“I like to paint all kinds of things,” said Abbey, showing off a painting of an elephant that she made two months ago. “His name is Grey because he’s grey.”

“She has a little art studio in her home,” said van Gemert. “It’s up in this loft with an easel and it’s the perfect little space to paint. She’s so talented, the pieces are amazing.”

Additionally, the FUN Society has donated four paintings to the art show, bringing the current total to 19. The money raised from the show will go to the National Foundation for Ectodermal Dysplasias, a U.S. organization dedicated to researching disorders such as Gorlin–Goltz syndrome.

“We’ve travelled to the States numerous times for research conferences and that’s where she wants to put the money,” said Sarah.

Tickets are $10 and can be purchased at the door or ahead of time through Sarah. Those who can’t make it to the show can also purchase “donation tickets” through Sarah.

The show runs Saturday from 2 to 5 p.m. at the Goward House, 2495 Arbutus Rd. For tickets and more information, look up the Abbey’s Art Fundraiser event on Facebook.

 

jacob.zinn@saanichnews.com

 

 

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