East Troy girl awaits Chinese stem cells

GazetteExtra ^ | 02.23.07 | Mike Heine

[Coleus]

In less than a week, a little girl from East Troy with a rare genetic condition will get on a plane with her mother, aunt and cousin and head to China to receive more than 60 million stem cells. Brooke Barels, 9, suffers from Glucose Transporter Deficiency, a condition caused by a genetic mutation of the gene that processes glucose from food into fuel for her body. As a result, Brooke suffers from cerebral palsy-like symptoms and cannot function like normal children.  She's the 83rd person in the world diagnosed with GLUT-1, as it's better known. She'll be the first person in the world to receive stem cells to treat resulting brain abnormalities that limit her speech and make her unable to stand longer than seven minutes without holding onto something.

Those affiliated with the Chinese hospitals and research center say the procedure is safe. Others stateside are not so sure. The injection is not available in the United States and may never be. Brooke's family says it's worth the risk. Vicki and Ed Barels say they will travel to the ends of the Earth to help their child.  "Brooke is very blessed to have them as parents," aunt Cindy Toman said. "I believe God knew what he was doing when he hooked them up. "Things happen for a reason, and Brooke came to them because she needs extra care. She landed in the lap of parents who will go halfway around the world for her."   On Friday, the journey will begin.

Said to be safe
Brooke's neurologist at Children's Hospital of Wisconsin isn't sure Brooke needs the procedure, Vicki said. GLUT-1 is a nonfatal disease, and Brooke can manage the severity of its symptoms with a special high-fat, low-carbohydrate diet.  "In my eyes, if it can help her, we're going to do all we can," Vicki said. "That's what it pretty much boils down to."

Brooke's family is reassured by the research done in China about umbilical cord stem cells. Xiaoshan Hospital in Hangzhou has treated more than 100 people with cerebral palsy, and only three have not seen positive results. None has experienced a negative reaction to the stem cell injections, said Kirshner Ross-Vaden, a registered nurse who works with Stem Cells China as a liaison between China and American patients.   "There is no risk to the child. The treatment itself is extremely safe," Ross-Vaden said. "Umbilical cord stem cells have been used in this manner well over 20 years.  "I would never ask any mother to put their child through this process if I thought there was a possibility that it would harm this child in any way."

Some won't say
Dr. Darryl DeVivo first diagnosed GLUT-1 in 1991, said Kris Engelstad, clinical research coordinator at Columbia University in New York City. Since the stem cell injections are not approved in the United States, DeVivo is unable to say if he is for the treatment or against it, Engelstad said. "It's not something that he could say, 'This is something you might want to do,'" Vicki said. "He also didn't say, 'I think you're crazy; this is a pipe dream; don't do it.' It wasn't one way or another."

Caution is the word
Researchers at UW-Madison deal mostly with the more controversial embryonic stem cells, rather than stem cells taken from the umbilical cords of healthy newborn babies. When dealing with such treatments, it's important to assess them carefully and understand why they are not available stateside, said Terry Devitt, director of research communications for the university.  "It could be that it's a legitimate treatment and it is able to get to market faster because the regulatory process may be easier to navigate than in the U.S. But sometimes, these treatments are not what people claim they are."  Devitt said people should be wary of some stem cell claims and seek the best medical advice they can get.

Certainly convinced
If the plane tickets they've bought are any indication, the Barels family is convinced the stem cells will help. They know it won't be a miracle cure for GLUT-1, but they hope Brooke shows signs of improvement with her motor skills within three to six months.   "I'm going to be watching Brooke and every move she makes like she's under a microscope," Vicki said. "We're hoping to see some improvements and cognitive change."  The Barelses hope other families with children suffering from brain abnormalities see the improvements that Brooke experiences.   "Just getting the word out that this might be a possibility, to share with other families a success story would be incredible to me," Vicki said. "It could be a success story for them, and they could see their child develop in ways that they might not see otherwise."