FENTON TWP. – Giving Karly Pollack a second chance at a normal life may come from an experimental stem cell transplant not performed in the United States.
Her family left Sunday for the Bahamas where a California doctor will perform the treatment using cells harvested from umbilical cord blood.
The Pollacks have taken a second mortgage on their home to pay for the trip and procedure that may repair her spinal cord and allow Karly, 5, to walk on her own.
“I don’t care if we end up living in a cardboard box. I feel strongly that this is the answer for Karly,” said her mother Karen Pollack, 42, a former social worker who gave up her career to care for Karly, her youngest of four children.
“It shouldn’t be this hard to care for your kids, and there are other families who could benefit from this treatment,” she said.
Pollack and her husband, James, a heavy duty equipment mechanic, have hustled to collect the $20,000 that may change their daughter’s life.
Karly was born without some of the natural coating that surrounds nerve tissue in the brain and spinal cord called the Myelin sheath.
A breakdown in the insulation around nerve fibers causes problems with vision, walking, talking and memory. Those with Multiple Sclerosis face similar hurdles when MS strikes and wears away their myelin.
“It’s like the worst case of MS, except those affected by hypomyelination like Karly never have a chance at a normal life,” her mother said.
The stem cell treatment will be performed Tuesday in a Freeport hospital by Dr. David Steenblock, an osteopathic physician who runs the Brain Therapeutics Medical Clinic in Mission Viejo, Calif.
The Pollacks expect to return home Friday.
The procedure is controversial. Except for some families treated by Steenblock who have seen improvements in their child’s Motor skills, it is an unproved treatment that is considered experimental.
Still, stem cell transplants are a new frontier in medicine. It is believed that stem cells, the body’s building blocks, can replace cells damaged by diabetes, spinal cord injury and Parkinson’s and Alzheimer’s diseases.
Stem cells collected from the bloodstream or the discarded umbilical cords of newborns have been used to treat leukemia and other blood diseases. They only form blood cells.
Embryonic cells are considered the most versatile. In 2001, President Bush limited federal spending on research using stem cells collected from embryos that are destroyed.
Developing treatments for demyelinating diseases is hit-and-miss and heartbreaking for parents, and unfortunately, there is no cure, said Dr. Ahmad Kaddurah, a pediatric neurologist at Hurley Medical Center who is not involved in Karly’s care.
Demyelinating diseases got the Hollywood treatment in the film “Lorenzo’s Oil,” in which a father concocts an oil mixed with foods to treat his son.
But dietary supplements containing glycerol trioleate and glycerol trierucate (Lorenzo’s oil) have not been shown to slow the disease.
Bone marrow transplants have been helpful with some inherited forms of demyelinating diseases, if tried when children are young, said Kaddurah, but the Pollacks are putting their hopes in stem cells.
The Pollacks have been on the Internet constantly since MRIs and blood tests diagnosed Karly’s spinal cord problem two years ago. It’s unclear why her nerve tissue did not fully form, which usually happens in the second trimester of pregnancy.
Karly is enrolled in a Physical Therapy program at North Oakland Medical Center that has helped with her balance. If placed upright, Karly can sit up on her own now.
Her parents hope for bigger gains after the cell transplant. The results should be apparent in six months, they were told.
“If we wait around for the U.S. to accept this, I’m afraid it will be too late for her to experience a normal childhood,” Pollack said.
THE FLINT JOURNAL FIRST EDITION
By Shantell M. Kirkendoll