Sierra Fedelem may look like any other 20-month-old, but her parents are doing everything they can to make sure her life is just like that of any other healthy human being.
Stem cell research has stirred quite the controversy in the United States, and though the current administration’s recent policy reversal on the issue could open the markets to treatments and commercialization, it’s still an option unavailable for American patients, like Sierra, unless they’re willing to travel across the world.
“The first time the neurologist said, ‘No, you don’t realize it, she’s never going to be able to walk, talk and see, and she’s always going to be at the mental level of a 4-month-old’,” Rosetta Fedelem said. “We were just shocked.”
The Fedelems hadn’t realized the extent of the brain damage Sierra suffered during birth.
“We said ‘We’re not going to stop, we’re going to start doing as much as you can for her’,” Rosetta said. “So we started praying and researching.”
Their research landed them in China, where Sierra received several treatments of adult stem cells extracted from somebody else’s umbilical cord. Adult stem cells differ from embryonic stem cells, in that they can be retrieved from adult organs or tissue.
While leading U.S. experts say the possibilities are far-reaching, the quality of overseas studies remains uncertain.
“It’s very hard to tell which is a good place, and which is not,” Texas A&M Health Science Center College of Medicine Institute for Regenerative Medicine Director Dr. Darwin Prockup said. “But of course, patients get to be desperate, and you can’t blame them for trying.”
Dr. Prockup said better adult stem cell treatments in the United States are coming. In March, President Barack Obama signed an executive order, reversing Bush administration policy, to allow scientists to continue stem cell research on ongoing projects. The results of the research will determine when the United States will open its doors to treatment.
“Of course there’s always danger with any therapy, so you have to be very careful, there’s always a risk-benefit you have to weigh carefully,” Prockup said. “That’s done in good medical centers. That’s why we’re a little slower.”
The Fedelems said they did weigh the pros and cons.
“I don’t accept new things easily, but when there’s enough evidence of results, I’m willing to try them,” Jason said. “And that’s exactly what happened here.”
In the three weeks they’ve been back from China, Sierra can sit up on her own for a few seconds, do an army crawl, and stand up for more than twice the amount of time she could before. Plus, her parents say she’s more alert and vocal.
Rosetta and Jason say they want Sierra to be able to walk, talk and see.
“Now we don’t know exactly which of those goals she’ll reach,” Rosetta said. “Our goal is, as parents, to push her to achieve her greatest potential, whatever that is. We’ll love her no matter what.”
The Fedelems said they spent more than$23,000 on treatments in China, but they raised $45,000. The rest of the funds went to a hyperbaric chamber, and other treatments Sierra will receive in Florida in two weeks.
To learn more about Sierra and how you can donate to help the family with medical expenses visit SightForSierra.com.
Dr. Prockup said the institute will be working on four clinical trials. By the end of the year he expects they’ll begin one with adult stem cell research for treatment on knee cartilage repair. The institute also plans to conduct stem cell research on diabetes, heart disease and strokes.
from News 8 Austin