[cnn-photo-caption image=http://i2.cdn.turner.com/cnn/2009/images/06/03/art_stem_family.jpg caption="Sierra Journey Factor, 8, has a muscular disease that her mom, Shaylene Akery, hopes can be treated in China."]
By Drew Griffin and David Fitzpatrick
CNN Special Investigations Unit
TITUSVILLE, Florida (CNN) - It's shortly after 5 a.m. when the phone rings, and on the line is a clearly anxious and worried parent.
"Sierra is having a lot of problems tonight," Shaylene Akery tells a CNN producer. "We have to take her to the hospital, but we still want to talk to you about her trip to China."
Her daughter, Sierra Journey Factor, is 8 years old and has a terminal disease called Type 2 spinal muscular atrophy, a genetic disorder that affects parts of the nervous system that control voluntary muscle movement. In addition, she has a restrictive lung disease and a kidney disorder. She has used a wheelchair since infancy.
Sierra's mother, her stepfather and her biological father, A.J. Factor, all know that Sierra is seriously ill. On the morning we met them, Sierra was treated at two hospitals before she was stabilized.
But the family is convinced of their next step - taking Sierra on an arduous trip to southern China, where they believe the little girl will be injected six times with stem cells during a 34-day stay. It's the kind of treatment not yet approved in the United States by the Food and Drug Administration.
Sierra's treatment will cost $26,500, which does not include the cost of travel and living for the extended family. Those costs would mean an additional $25,000, according to Akery.
"We are really walking into this blindfolded," Akery said. "It's scary, but everybody says it's so nice over there."
The family says it got most of its information from a Web site called China Stem Cell News, at stemcellschina.com, which boasts of dozens of anecdotal testimonials from loved ones who say their children or family members showed improvement after the stem cell treatments. The site offers no scientific evidence and no means of making contact except through a Web form. CNN used the form, but as of yet has received no reply.