Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, March 26, 1990 TAG: 9003262324
SECTION: VIRGINIA PAGE: A3 EDITION: EVENING
SOURCE: CHARLES HITE MEDICAL WRITER
DATELINE: LENGTH: Medium
The Botetourt Jaycees established a special fund for Moore early this year after his mother asked for help in raising money for a bone marrow transplant.
Moore, 6 months old, died last week at Bowman Gray Medical Center in Winston-Salem. He had been undergoing experimental drug therapy there for several weeks while a search for a suitable bone marrow donor continued.
Nearly all the money contributed to the Botetourt Jaycees will go to a foundation that has been established to aid the research of Dr. Lyndon Key, a pediatric endcrinologist at Bowman Gray who was treating Andy.
Some of the funds may go to help pay for Andy's funeral expenses, said Tom Kirby, president of the Botetourt Jaycees. Most of the funeral costs have been underwritten by Lotz Funeral Homes, Kirby said.
The non-profit foundation to help Key's research was established late last year by James and Marjie Hartley of Giles County. The Hartleys' 6-year-old son, Andrew, has been under Key's care for about five years.
Andrew Hartley suffers from osteopetrosis, the rare, genetic bone disease that Andy Moore also had. About a dozen children are born with the disease each year in the United States.
Victims of osteopetrosis are unable to break down and reform bone as normal children do. As a result, bone marrow cavities - the hollow tubes in the bone where the body's blood cells are formed - begin to fill in. Bones become brittle and easily broken.
As the disease progresses, a buildup of bone deposits in the skull compresses the optic and auditory nerves, eventually causing blindness and deafness. The disease also prevents the bone marrow from manufacturing cells to fight infection. Many victims die from overwhelming infections.
The decision by the Jaycees to donate Andy's funds to Key's foundation is "great news," said Marjie Hartley, Andrew Hartley's mother.
Hartley said she and her husband established the foundation because Key was having more and more difficulty getting federal grants to support his research on osteopetrosis.
"Fewer and fewer federal dollars seem to be going to research," Hartley said. "The money seems to go the the glitzy diseases that get a lot of publicity."
The foundation would primarily support Key's research but also would pay emergency medical expenses for needy families.
Key has four children that he hopes to start soon on interferon gamma, a protein substance that Key believes can help stimulate the cells that allow the body to break down and reshape bone. Andrew Hartley has been receiving interferon gamma since November. Andy Moore had been on the drug several weeks.
The foundation will support research into other types of therapy as well. Key has treated several osteopetrosis victims with calcitriol, a concentrated form of Vitamin D. Many of these patients have responded well to the treatment.
Approximately $2,500 also has been raised for Andy Moore by Doug and Dee Galliher, owners of a Roanoke restaurant and bar. Any money not needed to help pay for unmet medical costs probably will be turned over the the Jaycees fund, Dee Galliher said today.
Kirby, the Jaycees president, said he has been told most of Andy's hospital bills are expected to be covered by Medicaid, the government health insurance program for the poor. Medicaid in Virginia would not pay for a bone marrow transplant for Andy.
Anyone wishing to make donations to foundation established the Hartleys can send contributions to The Osteopetrosis Foundation, P.O. Box 671, Pearisburg 24134.
by CNB