Video: Newport Teen Battling Rare Disease Gets Dream Room Makeover

A Newport Beach teen battling a life-threatening illness will soon enjoy a newly remodeled dream bedroom, recording studio and office thanks to a group of hardworking and compassionate local volunteers.

The remodel project for thirteen-year-old Shira Strongin is spearheaded by Special Spaces, a nonprofit that offers children who are fighting life-threatening diseases with life-changing dream room makeovers.

"For her, just getting out of bed is hard," Shira's mom, Barbara Granoff said.

Shira struggles with a life-threatening disorder, known as Ehlers-Danlos syndrome. Her entire body is affected by her disorder, and everyday she deals with chronic pain, dislocating joints, a rare bleeding disorder and many other ailments.

It's a very different life than the one Shira lived just a few years ago.

"She was a passionate dancer, and she got injured in a dance class right before her 10th birthday. It was kind of like a whiplash to her whole side of her body," Granoff explained. "That's what doctors call the "trigger event" that kind of sent her system spiraling."

Today Shira spends a lot of time home-schooled and bedridden and is only able to really enjoy hanging out with her friends at her own house.

"She has a heart as big as they come, and I don't think she has ever felt sorry for herself," Granoff said. "She just keeps on going."

So to help Shira be able to enjoy her days a little more with her friends, Special Spaces rallied a group of 20 volunteers to spend Friday and Saturday transforming Shira's childhood bedroom into a more grown-up room, revamping her hangout room into a recording studio where she can sing and play the piano and guitar. The volunteers also created an office for her schoolwork.

Shira's vocal teacher nominated her for the Special Spaces room makeover, and it was Denise Sutherland, director of the group's Orange County chapter, who selected Shira for the project.

"When we first reached out to her family, Shira's mom said, 'I know there are other families that are more deserving,'" Sutherland said. "But we knew Shira deserves this. She has such a pure spirit."

Special Spaces has done various room makeovers for sick children like Shira all over the country, and they come from all walks of life.

"Life-threatening illness don't chose a family based on socio-economic status or background," said Shelly Ham, the nonprofit's Bay area director. "These room makeovers help bring these children out of the adult world and back to just being a kid."

"This special project will make the house so much more inviting for her friends to come over and hang out," Granoff added. "We would have never had the energy, time or creativity to do it for her."

Be sure to watch the video of Shira's mom discussing her daughter's rare disease and why the dream room makeover will lift Shira's spirits.

Editor's note: Check back with newportbeach.patch.com on Sunday to see Shira's newly remodeled rooms.

For more information on Special Spaces or to learn how to become a volunteer, visit specialspaces.org.

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