Rachel Fryar is certain her son's umbilical-cord blood helped to reverse his cerebral palsy, though the treatment hasn't been scientifically proven.
Fryar visited Cord Blood Registry in Tucson on Thursday, along with her 4-year-old son, Luke, to say "thank you" to its staff for storing her son's umbilical-cord blood.
If two randomized clinical trials now under way determine that infusions of umbilical-cord blood are regenerative for even a small percentage of patients with cerebral palsy, it could result in a major change in scientific thinking about the uses of cord blood.
In addition to treating cerebral palsy, there's another potential use of a child's own cord blood that's also being tried in a federally approved clinical trial - as a treatment for autism. The Sutter Neuroscience Institute in Sacramento is teaming with Cord Blood Registry to evaluate the ability of an infusion of cord-blood stem cells to help improve language and behavior. The study will enroll 30 children who have a diagnosis of autism.
The Fryars stored the cord blood of all three of their children at the south-side facility because of a family history of cancer. They had no idea they'd be needing Luke's cord blood when he was 15 months old, after he was diagnosed with cerebral palsy. Doctors believe he suffered a stroke in utero.
"It was almost like there was no mind-body connection that his arm was connected to his body," Fryar said. "I was devastated. I wondered if he would ride a bike, play soccer, go to a regular school."
Luke ran around the cord-blood bank Thursday with no signs of any physical impairment, though the stroke affected the right side of his body, particularly his arm, his mother said.
There is already quite a bit of anecdotal evidence in literature and from patients like Luke Fryar that an infusion of a child's own cord blood helps treat cerebral palsy, which has no cure and limited treatment options.
Much of it comes from parents like Rachel Fryar who share their stories with Cord Blood Registry, which stores cord blood from more than 425,000 newborns. The private, for-profit company says it is the world's largest cord-blood bank.
Stem cells harvested from the umbilical-cord blood are frozen and stored in giant stainless-steel flasks called dewars that keep the units of blood in liquid nitrogen at a temperature of minus 354 degrees Fahrenheit. Umbilical-cord blood arrives at the Tucson facility by medical courier 24 hours a day, 365 days a year.
There is evidence that cord blood infused in neurologically damaged animals has a restorative effect, said Dr. Hugh Miller, a maternal fetal medicine specialist who works at Tucson Medical Center.
"There is not empiric evidence that it works in humans," Miller said. "But I'm supportive of the potential, and enthusiastic about the trials that are going on because this is an area that we need to explore."
Luke's infusion of cord blood took about 10 minutes and was done in North Carolina because he's part of a clinical trial at Duke University.
His mother says Luke began showing signs of better awareness of his right arm and better balance after the infusion.
"After having his infusion, within about a month or so, he began to look at his arm. He started to stroke that arm. Before in physical therapy he'd spend five minutes playing and 45 minutes crying. But within a few months it was the opposite - 45 minutes of playing and working and five minutes crying," Fryar said.
A growing body of published data on cord-blood research indicates that infused stem cells help injured brain cells recover and replace brain cells that have died.
Miller said one of the unique aspects of the therapy is that there's no known risk. It's not known exactly how the stem cells work in the child, but presumably they are identifying areas of injury and grafting into those areas in a way that we don't understand, "and ameliorating the underlying deficit in a way that we don't understand," he said.
Donated umbilical-cord blood has proved successful in treating and even curing many blood cancers and anemias - most notably childhood leukemia. But infusing a child with his or her own cord blood for regenerative purposes is a relatively new concept.
"If it can be demonstrated to be a benefit, even to a small percentage of people, it will result in a paradigm shift in how we regard cord blood," Miller said. "Up until now we've largely regarded it as a substitute for bone marrow."
Luke is now riding a bike and playing soccer and doing a lot of activities his mother had once only hoped would be possible, she said.
"It was almost like there was a window that was stuck. We couldn't open the window. We weren't making any progress in therapy. We were getting nowhere," Fryar said. "Then we were given these stem cells and all of a sudden we started to see progress."
AT A GLANCE
• Cord Blood Registry's Tucson storage: Banking umbilical cord blood costs an initial fee of $2,070 plus a yearly storage fee of $125. For more information go to www.cordblood.com
"It was almost like there was no mind-body connection that his arm was connected to his body. I was devastated. I wondered if he would ride a bike, play soccer, go to a regular school."
Rachel Fryar, talking about her son, Luke, and his diagnosis of cerebral palsy
Contact reporter Stephanie Innes at firstname.lastname@example.org or 573-4134.