By Shawn D. Lewis
From The Detroit News
February 11, 2013
Andrew Kijek, 11, cannot crawl, walk, talk, hold his head upright or control his muscles. He was diagnosed with spastic cerebral palsy a year after suffering oxygen deprivation during a difficult birth.
“He’s already perfect,” said Maureen Kijek of Shelby Township, gently cradling her son’s head after a recent physical therapy session. “We just want him to be happy.”
Andrew’s parents are hoping for a medical miracle this week when he’ll be infused with his own umbilical cord blood stem cells. The procedure is part of the first Food and Drug Administration-approved trial on the use of cord blood stem cells for cerebral palsy; Andrew will be the second Michigan child to participate.
The Shelby Township boy’s cord blood was frozen and banked following his birth. Only 5 percent of pregnant women nationally save their child’s umbilical cord blood, which can be used to treat various illnesses, according to the Cord Blood Registry in San Bruno, Calif., a large private stem cell bank.
Andrew and his family will travel to Georgia Regents University in Augusta, Ga., where the stem cells will be thawed and reintroduced intravenously into his body Friday. It will be the first of four visits to the university.
A family history of cancer prompted Andrew’s mother to store his cord blood.
“There’s a history of breast cancer — my mom died from it when I was 18, so I felt compelled to do it,” said Kijek. She calls her decision a “whisper from God.”
She is cautiously optimistic about the trial.
“We are super excited, hopeful and the timing just feels right,” Kijek said.
The first Michigan participant in the trial was Allison Thurman, 3, of St. Clair Shores. Allison, who was clinically diagnosed with spastic cerebral palsy in 2010, completed the trial treatments a year ago. Since then, her mother, Erica Thurman, said she has noticed improvement in her daughter’s speech and ability to use her legs.
“At first, she was only able to use her walker when we assisted her by holding her around the hips,” Thurman said of her daughter. “Two weeks after the stem cell injections, she was pulling herself up on her walker.”
Thurman said Allison’s speech also has dramatically improved.
“Her vocabulary has increased, the clarity of her words, pretty much everything has improved,” she said.
Cerebral palsy results from brain damage that occurs before, during or shortly after birth. Symptoms include speech and muscular difficulties.
Banking stirs controversy
According to the American Pregnancy Association, cerebral palsy affects about 500,000 people in the United States.
To try to lessen the condition’s impact, Andrew attends sessions three times a week at the Crawl, Walk, Jump, Run Therapy Clinic in Sterling Heights. He also attends school five days a week.
“He has some respiratory issues, but other than the cerebral palsy, he’s really a healthy child,” his mother said.
Kijek keeps the dream of Andrew being able to walk one day in the far distance. She said her most immediate hope is to ease his discomfort.
“He’s obviously a smart kid,” said Kijek. “He’s just trapped in a body that doesn’t work.”
But while Andrew’s stored cord blood is a source of hope for the family, the practice of banking has generated some controversy in the medical community.
The American Academy of Pediatrics in 2007 came out against privately banking a baby’s cord blood for possible use later. But the academy is studying a possible change in its position.
“The current AAP policy is to recommend auto/directed donor banking in families who have another affected family member with a disease that can be treated successfully with a … matched sibling cord blood transplant,” said Dr. Mitchell Cairo, chief of pediatric hematology, oncology and stem cell transplantation at New York Medical College. The Cerebral Palsy International Research Foundation in Princeton, N.J., has endorsed such trials.
“Properly conducted trials of cord blood-derived stem cells … are of critical importance,” said Dr. James A. Blackman, medical director of the foundation. Using cord blood stem cells is not new.
The cells, which are capable of renewing themselves through division and can be induced to become tissue- or organ-specific cells, have aided in treating diseases such as leukemia and other cancers for the past 20 years, according to the Cord Blood Registry.
Stem cells are being evaluated for their use in repairing and replacing cells damaged by disease or injury, including cerebral palsy.
But privately banking cord blood is not cheap.
It can be stored publicly at no cost, but with no guarantee it will be saved for the donor’s family if needed.
Privately banked blood is specifically used for one’s family. Kijek said her initial cost was $2,500, and storage costs about $100 a year.
To participate in the Georgia Regents University clinical trial, which began in 2010, parents must have stored their infant’s cord blood with the Cord Blood Registry. The trial will involve 40 children. Thirteen children have been accepted, including Andrew and Allison.
‘The greatest gift’
Allison’s parents had been informed about the option of storing cord blood and decided to pursue it when she was born.
“We looked at it as insurance,” said Erica Thurman.
Allison was born prematurely at 32 weeks, and as she developed, her parents realized she was missing her milestones. Allison was clinically diagnosed with spastic cerebral palsy that affects only her legs, while Andrew’s legs and arms are affected.
The stem cell transplant is an experience Thurman said she would repeat.
“My husband and I feel it is the greatest gift we could provide our child,” she said. “We want our child to live a happy, fulfilling life and to be as active as she possibly can — physically active, whatever that is, to reach her maximum potential.”
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