Moore photo _ Henry Moore (second from left) is a junior at Radford High School and is grateful for a bone marrow transplant he received 10 years ago. Also pictured are members of his family: (from left) brother Harper, mother Angela, father Patrick and brother Samuel.
Henry Moore is a typical 16-year-old. He plays golf for Radford High School, loves to shoot hoops and dribble a soccer ball every now and then and is preparing for the school’s prom that will be held later this week. But it wasn’t long ago that his parents, Angela and Patrick Moore, were concerned that Henry might not have a chance for Chapter two of his life.
After Angela took nine-week-old, Henry, to the doctors with a high temperature, they received news that all young parents fear. Their son was diagnosed with something other than a cold or virus.
Henry Moore’s family was told he had Kostmann’s Syndrome, a disorder of the bone marrow where the body lacks a white blood cell that is important in fighting infection.
“It turned our lives upside down,” Angela said. “Here we were a young couple with our first child.”
Kostmann Syndrome is listed as a rare disease and affects less than 200,000 people of the U.S. population. Children born with Kostmann’s lack neutrophils or granulocytes that help individuals fight off infections. Typically, the disease is hereditary but no one else in Henry’s family has shown any symptoms.
Normally Kostmann’s make its presence known in the early years of life, and most children may develop fevers and infections in different parts of the body like skin and lungs.
Angela Moore said the effort to save her first-born was trying on the family as she and Henry spent months of time at the University of Michigan hospital. The family was led there after Angela sent a heartfelt email about her son’s condition to doctor that was an expert in the Kostmann field.
In April 2000, community members in Radford organized a bone marrow drive for Henry, and over 1,700 people including many Virginia Tech football players turned out and took the test. The cost was $85 for each test, but several local civic clubs donated monies to cover the cost.
An estimated 40 people have received bone marrow transplants from that early drive, but no match was found for Henry. The need was sent to a national registry where finally a match was discovered.
The first transplant did not work, so Henry had to receive a second one that was successful.
His father said Henry’s body rejected the transplant. During the time leading up to the surgery, the family turned to an experimental drug that was not initially covered by health insurance.
“It cost $30,000 a month, and Henry took it for the eight years leading up to this transplant. We had to do it cause it was the only way we and the doctors thought we could keep our child alive,” Patrick Moore said.
Insurance would later approve payment for the prescription.
Financially, it drastically affected the family. There was also the time away from each other as mother and son would spend months in a little apartment near the Michigan hospital.
“Henry’s little brother would cry every time Angela and him would leave for the hospital. He feared Henry would not return home,” Patrick said.
Henry’s younger brother’s would save their “tooth fairy” money and give it to their parents so others could be tested as possible transplant donors.
“This was drastic and tough on all of us, but it has made us stronger,” Patrick said.
Even following the transplant, there was a lot of concern. Henry would have to take at least six pills a day every day for the past six years. He, no longer, has to take the medicine
“It took a toll on us, but we survived and Henry survived. Now, I have soon to be 17-year-old that is a thorn in my side,” Angela laughed as she remembered those early years.
Tuesday was the 10th anniversary of the second transplant that saved Henry Moore’s life, his father is thankful for finally having a normal life. Two years ago, doctors gave Henry a clean bill of health.
“I am blessed to have gotten a bone marrow transplant. Not many children have survived even with one,” Henry said.
In so many ways, the youngster compares his life to his golf game. “I have improved my game, but know I must get even better. People need to remember tomorrow is not promised,” he said.
He has worked hard to make sure people remember that last statement and to know there are others out there that could use your help.
Henry spoke to over a 100 Rotarians last year on why they should have a bone marrow test. He also has stepped on stage at several Rick Hendrick’s fundraising events that have raised monies toward bone marrow drives.
Hendrick, the owner of several NASCAR race teams, was diagnosed with Leukemia several years ago and received his own bone marrow transplant. Following his fight, he has become a major fundraiser and supporter of bone marrow efforts.
In 1997, Hendrick formed the Hendrick Marrow Program, which raises funds supporting the “Be The Match Foundation” with the goal of adding volunteers to the national bone marrow registry and providing patience assistance to leukemia and blood-related disease transplant recipients.
Henry has met his donor, Russ Baxter, and stays in touch to this day. A picture of Baxter hangs on the Moore family refrigerator.
“He is an important part of our lives and will always be family. He saved Henry’s life,” Patrick said.
When contacted Sunday in London, England, Baxter said he got tested because a friend’s child had leukemia and was looking for a transplant. “I would encourage everyone to be tested (bone marrow). You never know when you might save someone’s life,” he said.
While Henry Moore doesn’t remember those early years when the next chapter in his life was in doubt, he does remember at the age of six receiving the transplant. He also knows how important that one donation by Russ Baxter was in his life.
He remains involved as an advocate for people to have their bone marrow tested. Recently he even convinced a class at Radford High School to raise money toward the Hendrick’s bone marrow effort.
Moore also plans to continue speaking out on the need for donors. “Now the test is nothing but a mouth swap and doesn’t cost over $25. So, there is no excuse not to be tested,” he said.
Henry Moore has set his sights higher and to continue to write the next chapter of his life. He has attended golf camp at the University of Alabama and is considering that school along with Arizona State and Radford University for his college years.
After graduation, he hopes to become a real estate agent. For more information on how to become a bone marrow donor, visit: www.bethematch.org.
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