A Central Texas couple who recently took their young daughter to China so she could receive experimental stem cell therapy is hoping and praying the treatment will soon allow her to see.
So far, the improvements 20-month-old Sierra Fedelem has seen from the treatments have been small, said her parents, Jason and Rosetta Fedelem, of Temple. She now can sit unsupported for short periods of time and is able to stand with assistance for a couple of minutes rather than a few seconds like before. Other than that, she is the same as before the treatment.
But the Fedelems are still optimistic that recent treatments may help prove Sierra’s U.S. doctors wrong. When she was born, a compressed umbilical cord and waste that backed up in her lungs prevented her from breathing. The resulting lack of oxygen caused doctors to say she will never walk, talk, see or eat on her own.
The Chinese physicians who preformed the recent treatments told the Fedelems it takes a minimum of four months for the stem cells to fully work. That was backed up by other patients at the hospital there, who told them it took six months or longer before they saw dramatic change, the couple said.
“It takes time for the stem cells to attach and begin growing,” said Jason Fedelem, 27, who works in customer service for Sprint.
The family was able to make the trip to China after numerous fundraising events by family members and friends, including those at Grace Community Church in Waco, where the couple are members. The treatment itself cost about $23,000. Plus, the family had travel expenses.
The couple took Sierra to China because the type of treatment she received is not allowed in the United States. It involves injecting stem cells into the patient’s bloodstream in the hope that the cells will attach to damaged tissues and repair them.
Numerous companies in various countries offer stem cell therapy, claiming they can help improve conditions ranging from spinal cord injuries to cerebral palsy.
The Fedelems chose a firm called Beike Biotecnnology Co., which leases a floor of a hospital in Hangzhou, China. They liked the fact that the company uses umbilical stem cells, rather than embryonic ones. Plus, there have been no reports of Beike patients having any problems, they said.
The family was in China for nearly a month, leaving May 4. While there, Sierra received stem cell injections once a week. Given through an IV, the injections pumped 10 to 15 million stem cells into her in about 30 minutes, her mother said.
On days when she did not get injections, Sierra received physical therapy and electric-wave therapy, which is designed to stimulate muscles.
Even if nothing miraculous happens, the Fedelems said they will not regret taking their daughter halfway around the world for treatment.
“Any improvement is good,” Jason Fedelem said. “Sometimes you’ve got to take what you can get.”
U.S. doctors wary
Aaron Levine, an assistant professor at Georgia Institute for Technology who is researching overseas stem cell therapies, said he understands why people seek them out. However, they worry most U.S. doctors, he said.
The pre-eminent concern is whether the injections are safe, Levine said. Because they have only been done for a relatively short period of time, there is no way to gauge long-term effects. One credible published report said a patient who received fetal cell injections developed brain and spinal cord tumors, he said.
Plus, the clinics and hospitals where the injections are performed typically have lax oversight, Levine said. Those that have attempted to operate in countries with rigorous safety standards have often been shut down, he said.
Some of the clinics use embryonic stem cells, Levine said. But most use either umbilical stem cells or stem cells derived from adult bone marrow, he said.
Further casting doubts on the therapies is that the doctors who perform them have not released detailed information about their methods, Levine said. The fact that the same treatment is purported to help up to three dozen different diseases is suspect. Everything reputable scientists have discovered about stem cells points to the likelihood that treatments would have to be tailored to a specific condition to be effective, he said.
It’s possible some of the clinics may have stumbled upon beneficial therapies, Levine said. But unfortunately, there is no way to know without the scrutiny of scientific trials, he said.
Glowing online patient testimonials lure in patients, Levine said. But proving their veracity is virtually impossible, he said. He added that once people spend thousands of dollars on a treatment, they are more likely to want to believe it worked.
“There’s a really strong set-up for a placebo effect,” he said. “You can’t discount that these treatments could have some effect. It’s a possibility. . . . But right now, I think there are overwhelming reasons to be cautious.”
Source: Wacotrib.com 25 May 2009
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