As part of our 50th Anniversary year, we’re looking back at powerful stories that reflect the strength and resilience of our community. This article published March 14, 1985 from the Suffolk News-Herald (go here and here to see the original copy) shares the early journey of the Bunn family—whose two young sons, William and Aaron, were diagnosed with hemophilia. Nearly 40 years later, their story is a powerful reminder of how far they and we as a community have come—and how much our shared support continues to matter.
Suffolk parents learn hard lesson about hemophilia from their sons
By LINDA McNATT, NE Suffolk Bureau Chief
Published in the Suffolk News-Herald March 14, 1985
Jennifer Bunn knew very little about hemophilia until her oldest son, William, was born. She knew the genetic disease was in her family—her uncle was a hemophiliac—but she had two brothers without the disease.
“My uncle died when he was 21,” Bunn recalls. “I was just a kid. I remember seeing him walking on crutches. I had heard the family talking about hemophilia, but it just never made an impression.”
Hemophilia made its impression when William was born six years ago. When he was circumcised, it required stitches—and still, the bleeding didn’t stop. When she and her husband finally took the baby home from the hospital, the bleeding began again. Tests verified that William had Factor IX deficiency, also known as Christmas disease.
For Jennifer Bunn and her family, William’s diagnosis was the beginning of an education. They learned that at least 20,000 males in the United States have hemophilia, that the disease is a hereditary blood-clotting disorder which affects males almost exclusively, and, eventually, they learned to live with the effects of hemophilia.
Those effects multiplied two years after William’s birth when his brother Aaron was born. Aaron, too, suffered from Factor IX deficiency.
“A woman is almost always a carrier,” Bunn explains. “Every male child born to a woman with a history of hemophilia in her family has a 50 percent chance of having the disorder.”
“Hemophiliacs don’t bleed more, they just bleed longer,” she adds.
It’s a common misconception, Bunn explains. Many people don’t understand the disease. Contrary to popular belief, hemophiliacs do not bleed to death from minor external wounds. Minor cuts are usually easily treated. The major problem is uncontrolled internal bleeding, which can begin spontaneously without apparent cause. If not quickly stopped with appropriate treatment, internal bleeding results in pain and swelling. Over time, repeated bleeding into joints and muscles can cause permanent damage and chronic pain.
“When the boys were small, I didn’t dare take them out in public without long pants and long-sleeved shirts,” says Bunn. “They were always black and blue. They looked like abused children.”
Many precautions had to be taken. The family was advised to get rid of their coffee table due to the risk of injury. Razor blades, knives, and all kitchen utensils had to be kept out of reach.
Until Aaron’s birth, William was treated with fresh frozen plasma whenever he had a bleed—whether external or spontaneous internal bleeding. Aaron, unlike his brother, has been fortunate not to experience as many spontaneous joint bleeds.
William, a first grader at Elephant’s Fork Elementary School, has had his most serious issues with an ankle joint. He often needs crutches to walk.
Both boys are now on home treatment. The drug Konyne, a clotting factor derived from human blood, must be infused into a vein. Each time internal bleeding occurs, additional clotting factor is needed. Although Konyne is effective in controlling bleeding, there is no cure for hemophilia. A child born with the disease will …have it all of his life.
And when Konyne doesn’t work, the boys must resort to plasma, which can cause additional problems. There’s hepatitis to worry about—William had a mild case last fall, believed to have been contracted from Aaron, who had received plasma for a serious bleed. For hemophiliacs, hepatitis may now be the least of their worries. AIDS (Acquired Immune Deficiency Syndrome) is a serious threat for anyone who receives blood plasma.
Konyne is heat-treated and sterile, so there’s little concern about complications—but it’s also very expensive. The Bunns usually purchase the drug by the case. It can cost up to $1,500.
Growing up with the disease, says Bunn, can be traumatic for little boys who want to be boys. Neither of them will ever be able to play contact sports, although swimming is an excellent joint exercise for them, and tennis may be a possibility. As the boys grow older, they will be taught to infuse themselves with the treatment.
“It isn’t easy,” says Bunn. “The boys are probably rougher than they should be. I try not to stand over them. They know they have a problem, and they have to be careful.
“This time of year, when they’re getting back outside, we have a lot more problems than when they stay inside during cold weather. But I try to look at the positive. They’re both great kids. I wouldn’t trade them for anything.”
The National Hemophilia Foundation was started in 1948. The Bunn family gets some help from the Crippled Children’s Foundation. Both boys must travel to Richmond twice a year for extensive physical examinations and blood tests.
This morning, Governor Charles Robb signed a proclamation recognizing March as Hemophilia Awareness Month. The Hemophilia Foundation is working to find a cure through research, to provide optimal care, to reduce the prohibitive cost of treatment, and to create employment opportunities.
“I worry about it a lot,” Bunn says of her sons, “but they don’t have to be prize fighters. I don’t get too flustered when something happens. I might fall apart after it’s all over—but we manage.”
The United Virginia Chapter of the National Hemophilia Foundation can be contacted by writing:
P.O. Box 777
Richmond, VA 23206
