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Sierra resumes life, with style Nyomtatás E-mail
Spinal Muscular Atrophy
2010. március 14. vasárnap, 09:30
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Source:  Floridatoday

HTITUSVILLE — It's back to Facebook, Club Penguin and school tests for 9-year-old Sierra Journey Factor, who nearly lost her life four months ago.

Sierra was on life support for 10 days in the intensive care unit at Arnold Palmer Hospital for Children in Orlando. She underwent surgery and now uses a ventilator to breathe.

"She did die, and they brought her back," said her mother, Shaylene Akery. She said doctors worked for hours in December last year to remove a mucus plug from Sierra's lung.

But none of this stopped the perky performer from stealing the show last weekend at the Shining S.T.A.R.S Pageant and Fashion Show at the Ormond Beach Performing Arts Center.

"It's the most beautiful and inspiring thing I've ever been a part of," Akery said.

The show, hosted by the Beu Sisters, features participants of all ages who have special needs.

"I had a lot of fun doing it," Sierra said of performing the song "Part of Your World" from "The Little Mermaid." Sierra's solo drew a standing ovation from the theater crowd.

But for Sierra, Miley Cyrus is the shining star who makes her go gaga. "I'm really close to meeting her," Sierra said.

When she was in the hospital, Sierra received a special package from the Cyrus family.

"I got all different color scarves -- blue, pink, yellow. I thought, Wow! I got a package from the actual Miley Cyrus."

Last fall, Sierra spent more than a month in China receiving stem cell injections for Type II spinal muscular atrophy, a genetic disease that affects the part of her nervous system that controls voluntary muscle movement.

She also has restrictive lung disease, a byproduct of SMA, and polycystic kidney disease, a genetic disorder characterized by multiple cysts in both kidneys.

"We would like to go back for more stem cell treatments, but it's just so hard to raise that much money. I know the stem cells are the reason she survived when her lung collapsed. She healed and recovered faster than any of her doctors expected," Akery said.

"She's still here, and she's my inspiration," the girl's mother said.

 

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