|Titusville girl prepares for trip to China for stem-cell therapy|
|Spinal Muscular Atrophy|
|周五, 28 8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.
Children such as Sierra with early onset Type II SMA have a life expectancy of 15 to 30 years.
Sierra uses a wheelchair. Despite her limited mobility, she dances and uses a flotation pillow to swim with friends. Her weak immune system has prevented her from going to public school. Sierra plans to communicate with her teacher by webcam while in China.
The family is spending $36,000 for the stem cell injections and $6,000 for airfare. They will stay in China for 34 days.
Last weekend, Sierra's family hosted a "miracle party" for close friends and family. Sporting a new hairdo for the trip -- a short bob with red highlights -- Sierra practiced Mandarin with her grandfather, repeating "hello" and "thank you." She excitedly talked about her plans to visit the Great Wall and try lots of new food.
"Right now, it's all about the food and the sightseeing, but she knows in the back of her mind that the treatments are there," said Tonya Witt, Sierra's grandmother, who plans to wake up early each day to talk by webcam with Sierra. "She's a strong little girl, and she'll do what it takes."
In addition to the stem cell injections, Sierra will endure three hours of various therapies, such as acupuncture, each day.
It has been a stressful few months for the family. Sierra was in the hospital most of June because of pneumonia and several colds and again for a week in August.
With each trip to Arnold Palmer Hospital for Children in Orlando, they feared that their China trip could be delayed.
"If we have any hopes out of all this treatment, it is that it helps her immune system because we are in the hospital all the time with her," said Sierra's mother, Shaylene Akery. "If it'll help her immune system, maybe she'll have the opportunity to go to school and get to do more kid things."
The stem cell injections Sierra will receive are 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.
Sierra's family has been in contact with other SMA-affected families that have received treatment and are encouraged by their progress. One boy who has the same SMA type as Sierra was able to straighten his arm after the second injection.
"Stem cells are probably going to help me straighten my arms, my fingers and help me sit up straighter," Sierra said. "And to lift my hands up in the air."
The family will return home Oct. 3.
"We don't want to go in with any expectations, but we'll go in very hopeful and see what happens," Akery said.