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Spinal Muscular Atrophy
Sierra resumes life, with style 列印 E-mail
Spinal Muscular Atrophy
週日, 14 三月 2010 09:30
There are no translations available.

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."

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Sierra returns home today 列印 E-mail
Spinal Muscular Atrophy
週一, 05 十月 2009 10:17
There are no translations available.

Source: Floridatoday

Sierra Journey Factor will return home today after a month of stem cell treatments in Qingdao, China.

The 8-year-old's fearless attitude helped her survive not only the medical procedures, but also the unfamiliar cuisine.

"No pain, no gain," she repeated to herself as she endured hours of physical therapy, acupressure and electric wave therapy every day.

"If it looks good, eat it," was her motto for trying new food. She used the line to persuade her stepfather, Clinton Akery, to try a jellyfish salad, but Sierra didn't feel it applied when she discovered squid in her chicken noodle soup.

Sierra has Type II spinal muscular atrophy, a genetic disease that affects the part of her nervous system that controls voluntary muscle movement.

She is not able to straighten her legs or arms. But since her stem cell treatment, which was not available in the United States, doctors have noticed Sierra's muscles
strengthening and improvement in her range of motion, mainly in her neck, arms and fingers.

"Our expectations were not to come over here and for Sierra to stand up or walk from having these stem cells as some people may think," Sierra's mom, Shaylene Akery, said in an email from China. "An overall better quality to her life is all we hoped for. If Sierra's immune system recovers then going to school for fourth grade may be a possibility. Any little improvements are huge improvements in our eyes."

The effects of the stem cells on her immune system are not yet known.

Sierra's family spent $36,000 for the stem cell injections and $6,000 for airfare. The stem cell injections Sierra received were from umbilical cord blood, which typically is discarded as medical waste. The cells reportedly migrate directly to the problem and program themselves to address whatever the body is missing.

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Titusville girl receives help in China 列印 E-mail
Spinal Muscular Atrophy
週一, 05 十月 2009 09:30
There are no translations available.

Source: Floridatoday

Spinal muscular atrophy patient more mobile with new stem-cellsSierra Journey Factor returns home after stem cell treatments in Qingdao, China. Unfamiliar cuisine also was a challenge. (Shaylene Akery, for FLORIDA TODAY)

A fan club of about 15 people armed with flowers and balloons eagerly awaited Sierra Journey Factor's arrival from China on Saturday at Melbourne International Airport.

But after air sickness on a 16-hour flight and adjusting to the 12-hour time change, the Titusville 8-year-old slept soundly through the hugs and happy tears.

Her return to the United States was bittersweet.

"She's never had as much freedom as she did there. She was sad to leave," said Sierra's father, A.J. Factor. "She made a ton of friends, 'got married' and had such a good time. She cried hard when she had to tell everyone bye."

Sierra spent 34 days in Qindao, China, receiving stem-cell injections as a possible treatment for spinal muscular atrophy.

Shaylene Akery, Sierra's mom, said the family had stocked up on stylish pink and purple princess face masks because the next few months are critical.

"If Sierra gets severely sick over the next six months, it can actually kill the stem cells," said Akery, wearing a jade necklace with Chinese characters for luck, power and long life.

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Titusville girl prepares for trip to China for stem-cell therapy 列印 E-mail
Spinal Muscular Atrophy
週五, 28 八月 2009 14:48
There are no translations available.

Source: Florida Today

 

TITUSVILLE -- On Friday morning, 8-year-old Sierra Journey Factor will embark on the trip of a lifetime.

The saucy Hannah Montana fan will travel like a rock star in a limousine -- donated by Brevard Executive Limousines -- to Melbourne International Airport, where she will begin a more than 16-hour journey to Qingdao, China, for six stem cell injections.

The treatment for spinal muscular atrophy is not available in the United States.

Sierra hopes it will allow her to straighten her arms and legs and strengthen her immune system enough to attend a public school.

"I'm kind of nervous about the plane ride," said Sierra, who is flying for the first time. "I might need a couple barf bags."

She and her parents will have to change planes three times across almost 8,000 miles through 12 time zones.

Sierra has 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.

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