By Tina Sykes
Michael Charles Metil, 14, will never benefit from a new state law that provides for screening of newborns for 29 disorders. When the Blairsville boy was born in Hershey, the state did not screen for glutaric acidemia 1, or GA-1, the body’s inability to break down amino acids for energy.
It usually strikes in the first decade of life during an illness such as the common flu, according to Dr. William Zinnanti of Penn State University.
The undetected metabolic disorder profoundly changed Michael Metil’s life when he was 11 months old.
He fell ill, vomited and went to sleep.
“He was still laughing and went to sleep and woke up with brain damage,” said his father, Michael Metil. “All we would have had to do the night Michael threw up would have been to take him to the hospital and put him on glucose.”
There is no treatment to repair brain damage associated with GA- 1, which left the boy disabled.
Metil has been a 12-year member of the American Society for Neural Therapy and Repair, which is seeking treatment to repair damage wrought by neurologic disorders.
“About a year or two after Michael suffered brain damage, my mission was: If I could repair his brain damage, then we could help other people,” Metil said.
He also is starting a Brain Repair Association in Western Pennsylvania to advocate for those affected by stroke, traumatic brain injury or other brain disorders.
“The No. 1 goal is to repair brain damage,” said Metil, citing the hope of stem cell research and umbilical cord cell transplants. “I want to start a support group, a communication among different people with brain injuries, brain disorders, brain disease and caregivers.”
Short-term objectives are “to share information, what works, what hasn’t worked, what’s on the horizon; talking to caregivers and getting a regional group going. Long-term objectives, after a year, to do fundraising, to do research, have political influence,” he said.
Metil envisions giving the campaign “a celebrity — somebody either inflicted with a brain disorder or a celebrity with a family member who is inflicted with a brain disorder.”
Mary Newman, a researcher in the neurosurgery department at Rush University Medical Center in Chicago, works closely with Metil.
“My laboratory is researching the feasibility of using human umbilical cord blood cells to treat GA-1. The premise of the study is because GA-1 is an auto-recessive metabolic disease of the cells that the infant is born with, in theory we should be able to deplete these ‘bad’ cells in the body and replace them with healthy new cells that will not have this disease,” Newman said.
Umbilical cord cells have been used for more than 15 years to treat children with various disorders “with excellent outcomes,” Newman said.
Researchers will implant umbilical cord cells into mice after inducing a model of GA-1 in one group.
Newman said infants diagnosed at birth can control the disorder with a low-protein, low-lysine diet.
“If we can transplant before the infant has a full metabolic crisis, the new cells may be able to stop this disease. For Michael’s case and the other children already with full GA-1, we need to see if transplanting the cells after will diminish the symptoms,” she said.
The Brain Repair Association will be a nonprofit modeled after the International Organization for Glutaric Acidemia, which Metil founded to enhance early detection of metabolic disorders, prevention of neurologic damage and to repair brain damage.
“Mike Metil is a wonderful, ambitious person who deeply cares for his son and other children faced with this and other terrible diseases,” Newman said. “I believe any person who can put together an association, care for his son, work and still keep a sane, good- natured outlook on life is someone I want in my life and someone I am willing to help in any way possible.”
(c) 2008 Tribune-Review/Pittsburgh Tribune-Review. Provided by ProQuest LLC. All rights Reserved.
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