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Volunteers Create Dream Room for Newport Teen Battling Rare Illness

Volunteers spent the weekend transforming thirteen-year-old Shira Strongin's old room into a place where she can hang out with friends and pursue her passions.

While thirteen-year-old Shira Strongin spent the weekend with her dad in San Diego, a group of dedicated volunteers were busy turning her dream room into a reality. 

The room transformation was made possible by Special Spaces, a nonprofit that offers children like Shira who are fighting life-threatening diseases with dream room makeovers. Shira, who was diagnosed three years ago with a disorder known as Ehlers-Danlos syndrome,  fell in love with her rooms the minute she returned home.

“This is incredible,” Shira said as the volunteers led her through each room for the first time. “Everything. It’s just fantastic.”

On Friday and Saturday, the Special Spaces team painted over the old pink and purple walls in Shira’s childhood playroom, and brought in couches, a jukebox, a popcorn maker and a TV to give Shira and her friends a place to hang out. They also converted an upstairs landing into a study space, complete with a new desk that one of the volunteers made by hand.

But that's not all.

They even turned a closet into a mini recording studio.

“This whole space was put together with so much love,” Barbara Granoff, Shira's mom, said as she looked around at the revamped rooms in her house. “It was such a joy to be here while you did this. I’m just blown away.”

The Strongins had planned to turn Shira’s old room into a dance studio, but because of her condition, she is often unable to even leave the bed and spends most of her days dealing with many ailments including chronic pain, a blood vessel disorder and joint dislocation.

So Shira, who used to be a passionate dancer, decided to turn to music.

“When I came to terms with that I wouldn’t be able to dance, I fell in love with singing, playing piano,” Shira said. “It’s something that lets you kind of escape, and for me that’s important. You can’t just focus on whatever’s a problem, because that won’t get you anywhere.”

Because Shira’s condition often prevents her from leaving the house much, the Special Spaces volunteers brought a little bit of the outdoors to her. The new room includes a green rug to remind Shira of grass, and a solar system lighting fixture to remind her of the sky.

“It’s been an amazing opportunity to have this done,” Shira said. “I feel so honored to have even been nominated, because most of the kids that get nominated have cancer, or these very, very serious illnesses. I know my disability is serious, I guess, but I don’t put it anywhere near what some kids have.”

The Special Spaces team was blown away by the appreciation and excitement the makeover brought to the Strongin family. Shelley Ham, the nonprofit's Bay area director, says that she usually never tears up during reveals, but she couldn’t help it during this one. Denise Sutherland, who heads the Orange County chapter, considers working with families like the Strongin’s to be one of her life’s biggest blessings.

 “She is such a special girl,” Sutherland said, as the team gathered in the Strongin’s kitchen for dinner. “She just emanates this light. And we’re not just saying that.”

“Yeah,” Shira’s dad, Mike Strongin added, as Shira’s laugh carried from the next room. He smiled. “She’s a good kid.” 

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

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Shawn Miller February 26, 2013 at 07:28 PM
This is a very touching story. It is a blessing to know that there are such generous people like this in the world. They should get more recognition like this. Thank you Patch for covering this remarkable team of folks. I hope Shira lives a long life knowing she touched the hearts of many.
Sara Gold February 27, 2013 at 05:54 AM
Shira is an inspiration to us all. Despite her challenges, she manages to be positive and selfless - she truly cares about other people and can always put a smile on your face. I am so honored to have her as a friend, and, while the condition she faces is unfortunate, this world is a better place because Shira is in it. Thank you to Special Spaces for remaking Shira's room, bringing happiness into her life like she brings happiness into the lives of the people around her. :)

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