Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, March 17, 1991 TAG: 9103170143
SECTION: VIRGINIA PAGE: D-4 EDITION: METRO
SOURCE: Associated Press
DATELINE: RICHMOND LENGTH: Medium
"We've never really accepted it," Joseph Slay said. "We've never given up on the fact he's going to walk and he's going to beat this thing."
Andrew, 4, has spinal muscular atrophy, a genetic neuromuscular disorder that in its acute form is the No. 1 inherited killer of children under 2 years old. Andrew, who has what is categorized as the benign form of the disorder, cannot walk or stand.
What concerns his parents most about Andrew's form of spinal muscular atrophy is that it is described as "life-shortening." The disorder progressively destroys the nerve cells that control muscle movement.
Andrew can get almost anywhere he wants to go in his motorized wheelchair, called a "Fireball." He can attend kindergarten, use a computer, play with his younger brother, swing and swim.
Much of Slay's optimism can be attributed to New York researcher Dr. T. Conrad Gilliam, a man Slay has never met but with whom he feels a kinship.
Gilliam, an assistant professor of genetics at Columbia University, spends most of his time stalking the defective gene that causes spinal muscular atrophy. He began his research on the gene in the spring of 1987, the precise time that Andrew, then 14 months old, was diagnosed.
Now, bolstered by photographs of Andrew and other children with spinal muscular atrophy, Gilliam says he is within "striking distance" of pinpointing the gene that causes the disorder.
Through tedious research, Gilliam and his colleagues have narrowed the number of possible locations of the faulty gene from 3 billion to 2 million.
"We'll find it," Gilliam said. "It's just a question of time."
For people like Andrew Slay, time is of the essence.
Although all Andrew knows is that "there are some people in New York who have good ideas," his dad sincerely believes the Columbia University gene research will lead to a cure for Andrew's disorder.
That's why Slay, president of Martin Public Relations here, spends most of his spare time promoting Gilliam's research.
He's trying to raise at least $1 million for additional staff and equipment that would accelerate the pace.
With an extra $1 million, Gilliam said, his research funding would be doubled and his work would go three times faster. He now receives money from the National Institutes of Health, the Muscular Dystrophy Association of America and a private foundation.
Gilliam explained that the research is at a labor-intensive stage. "We need a lot of people cutting DNA up, pulling it apart and analyzing it."
Also, Gilliam said, researchers need more technicians to take blood samples from families with a high incidence of spinal muscular atrophy.
The incidence is higher, he said, in cultures where it is acceptable for first cousins to marry each other.
Once the faulty gene is located, further research will be needed to determine what can be done to correct the gene in developing fetuses and in individuals who already have the disorder.
Correcting the gene deficiency could be as simple as administering a drug or as complex as implanting a healthy gene.
Either way, Slay believes his son will be one of the first to benefit from Gilliam's research.
***CORRECTION***
Published correction ran on March 18, 1991.
Amplification
An Associated Press story Sunday about a Richmond man trying to raise funds for research into his son's diesease did not report where contributions could be made. Contributions for research about spinal muscular atrophy can be made to the Muscular Dystrophy Association, 4502 Starkey Road, Suite 206, Roanoke, Va. 24014. Donations should be made in the name of Joseph Slay, the Richmond man.
Memo: CORRECTION