Source : Longmont Times-Call
By Susan Glairon
Mom hopes stem cells are answer for son
When her son was 2 months old, Annalise Schmutz wondered why he never looked at her. He always looked down and often closed his eyes. His eyes never tracked lights or followed a colorful toy.
Two months later, doctors told the single mother that her son, Kade, now 7 months, was blind.
“It was devastating,” said Schmutz, 18, who lives in Longmont with her mother, stepfather and two half-brothers.
Kade’s vision is limited to a small amount of light perception in his left eye.
He was diagnosed with septo-optic dysplasia, a rare birth defect characterized by underdevelopment of the optic nerve, a deficiency of hormones in the pituitary gland and the absence of the midline portion of the brain.
But Schmutz now has hope. She and her grandmother, Bev Jordan, 69, plan to take Kade this fall to the Xiaoshan Hospital in Hangzhou, China, for stem cell treatment offered by Beike Biotechnology. The stem cell treatments are unavailable in the United States because they are considered experimental.
“Our hope is just to get some vision returned,” Schmutz said.
Chris Hogan, associate director of the Charles C. Gates Regenerative Medicine and Stem Cell Biology Program at the University of Colorado Denver, said the treatments might have some value, but because no one yet knows how or if they work, they’re not approved in the United States.
“There’s no real science behind it,” Hogan said. “There is definitely a potential for it, but at this point, we just don’t know.”
Hogan said research would have to demonstrate how and why the treatments work before they can be offered in the United States. Such research would be followed by clinical trials to ensure patient safety.
According to news reports, thousand of people from around the world have flocked to China and other countries for stem cell treatments to try to cure a variety of ailments, from SOD to autism.
About 3,000, including 600 foreigners, have undergone stem cell treatments through Beike.
Beike Biotechnology told Schmutz that the stem cells it uses come from discarded umbilical cords and not from embryos.
In the United States, cord blood stem cells have been used to treat only blood-related diseases, such as leukemia.
Experts here caution about going abroad for such expensive and scientifically unproven treatments.
The fundraising Web sites established by parents for their children’s stem cell treatments commonly cite expenses between $50,000 to $70,000 for travel and the procedure.
George Daley, president of the International Society for Stem Cell Research and an associate professor at Children’s Hospital Boston, said through an e-mail that the ISSCR is concerned about the rise of “stem cell tourism,” traveling to foreign clinics that offer “unproven stem cell treatments for large sums of money.”
“It is important to note that other than for blood and immune system disorders, there are no established treatments with stem cells,” Daley noted. “More research is needed, and it is not typical of legitimate research centers to charge patients for experimental trials.”
Still, many online blogs contain success stories, including about 10 written by parents of children who have SOD or a similar disorder, optic nerve hypoplasia, who say the stem cell treatments restored some of their children’s vision.
Schmutz said she spoke on the phone with several of those parents.
Help online
After her son’s diagnosis, Schmutz and other family members frantically scanned the Internet for treatments.
There, Jordan found http://www.stemcellschina.com .
The family learned that the Beike Biotechnology procedure involves four to seven stem cell treatments in one month.
Then they’d have to buy and use a hyperbolic chamber at home to give the stem cells more oxygen, Schmutz said.
She said treatment costs vary from $20,000 for four stem cell treatments to $30,000 for seven treatments.
The hyperbolic chamber costs $10,000, and she needs to pay for a monthlong stay in China.
On her Web site, www.hopeforkade.com, Schmutz is trying to raise $70,000 to take Kade to China for the treatment.
So far, she has collected $3,000 from jars placed around town, and she has set up the “Miracle for Kade” fund at U.S. Bank to accept donations.
Schmutz is determined to help her son. She enrolled him in Dayspring, Imagine!’s home-based intervention program, and takes him to the Anchor Center for Blind Children in Denver twice a month for therapy.
Imagine! is a nonprofit organization that provides support services to Boulder County residents with developmental delays and cognitive disabilities.
Kade recently underwent tests to determine the extent of his pituitary deficiencies, but the results are not back yet.
According to an Internet search, in some cases children with SOD have pituitary hormone deficiencies, are blind and are mentally retarded, but there are milder degrees of each of the three problems, and some children have normal intelligence.
Schmutz’s mother, Parris Cardenas, 46, talks about the stories she’s read on stemcellschina.com.
“All I can tell you, the 10 kids who have been over there, every single one of them have had some sort of sight improvement,” she said. “You can shine a flashlight in my grandson’s eyes, and they don’t react. It’s been awful. It’s been a shock. All of a sudden, you are thrown in this world of the blind.”
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