Doctors have found a bone marrow donor for 7 yo
Published: March 21, 2007
It has finally happened. After years of community drives, national searches, extensive drug treatments and prayer, 7-year-old Henry Moore has found a bone marrow donor who could save his life.
His parents, Patrick and Angela Moore of Radford, call it a miracle.
“For seven years, we didn’t have a match, or not a good match, and now we’ve found six matches at one time,” Patrick Moore said.
Shortly after he was born, Henry was diagnosed with Kostmann’s syndrome, a rare disease that leads to leukemia and that makes his body susceptible to infection.
A bone marrow transplant offers the only hope of a cure.
The Moores hoped their other two children, Samuel, 5, and Harper, 2, would be a match, but they weren’t. New River Valley hospitals and health care centers have hosted more than 15 bone marrow drives for the National Marrow Donor Program, which links donors with people across the country in need.
Every December, the Moores pay to run Henry’s DNA through the program’s search engine, looking for someone who matches Henry’s genetic markers. But nothing led to a good match.
Early last year, there was a glimmer of hope when an umbilical cord match was discovered. Cord blood cells matched five of the six genetic markers that researchers were looking for. But it was too risky.
“Cord blood doesn’t work in many cases. These are anonymous cord blood donors. You can’t go back to that baby and get more marrow,” Patrick Moore said.
Disappointment came in waves for the Moores. But that was before the summer, when a new opportunity revealed itself.
The Moores found a newspaper article about a sperm bank donor who was infecting his offspring with Kostmann’s syndrome. Dr. Lawrence Boxer of Ann Arbor, Mich., was cited as an expert on the disease.
“I was reading it to my wife while we were laying in bed, and then she got up and Googled his name and e-mailed him,” Patrick Moore said. What followed next was sort of “creepy” — in a good way, of course, he said.
“He [Boxer] called us at 6 a.m. the next morning and said, ‘I know who you are,’ ” Moore said.
The doctor recognized Henry’s name from a medical study the boy is involved in. But medical privacy laws had prevented him from contacting the family.
“He said, ‘I’d just like to lay my eyes on him and see him,’ ” Moore said.
So the family flew to the University of Michigan’s C.S. Mott Children’s Hospital in November to meet him.
Boxer didn’t have good news. He told the Moores that Henry needed a bone marrow transplant right away. Doctors ran him through the national registry again on Nov. 30, and this time, five adult matches and one umbilical cord match were found. Doctors narrowed it down to one.
Patrick Moore said the Michigan doctors have performed 10 transplants on children with Henry’s disease, and seven of them survived.
He said he doesn’t know who the donor is. Donors and recipients can meet each other a year after the transplant, if both parties agree.
Henry will travel to Michigan with his mother and grandfather on Sunday to begin the procedure. First, he will go through tests to make sure he is ready for the transplant. On March 31 he will start chemotherapy, Angela Moore said.
The transplant operation is set for April 5 and will consist of a five-minute infusion of the donor marrow.
Patrick Moore will travel back and forth from Michigan, but his wife will stay with Henry.
“We have people already begging to baby-sit,” he said. “We worry about the other kids, how they’re going to do it.”
But first, there was a little celebrating to be done. On Friday afternoon, Henry did something he’s always wanted to do — he got a crew cut. Well, first he got a Mohawk, and then three minutes later he got a crew cut.
“This is awesome,” Henry said as he stared in the mirror at New Dimensions Hair Salon in Fairlawn.
Although they said it broke their hearts to see his silky, blond hair shorn, his parents let him get the cut because it will make the hair loss from chemotherapy seem less drastic.
“It was kind of tearful in a way, but he looks so much like his baby picture that I love it,” Angela Moore said.
Henry’s friend Zach Turk also got a haircut for moral support. Afterward, the two rubbed each other’s fuzzy heads in triumph.
Patrick Moore said the community has really come together to help his family.
Thursday night, a multidenominational prayer service was held at St. Jude’s Catholic Church in Radford. Friday morning, Henry was recognized at McHarg Elementary. His mother read a children’s book about transplants to his class. Afterward they shouted, “Go Henry!”
“I don’t go a day without someone asking about Henry,” Patrick Moore said. “To us, it’s just a miracle.”
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