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When cuts lead to crisis

Raising children is no easy task. But when a small cut can manifest into a deadly emergency, the job becomes that much more difficult.
That is what Jonesborough resident Sarah Bates has learned since the birth of her youngest son, Ian. The three-year-old suffers from hemophilia, a serious blood disease that prevents his blood from clotting.
Hemophilia manifests in a spectrum of severity, and little Ian has one of the most severe versions. Since he is missing a protein that is critical in his body’s ability to clot blood, many of the everyday bumps and tumbles of an active child can quickly become a crisis.
“We watch him for cuts, but bruises are as bad as cuts because that’s just bleeding under the skin, and with him it doesn’t stop,” Bates said. “And dental things are always scary, and jumping, too.”
In fact, whenever Ian jumps, small capillaries in his legs might burst. This would probably go unnoticed in anyone without the disorder, but not in Ian.
“A hemophiliac could just keep bleeding, and one good joint bleed could cause permanent damage and arthritis,” Bates said. “We have been very lucky because he has not had any.”
Bates, who has two other boys – Isaac, 17, and Israel, 5 – was tested each time she got pregnant to determine if any of her sons would have the disorder.
“My father, John Saylor Jr., was a hemophiliac, so I knew that I was a carrier. It can be passed through a mother who is the daughter of a hemophiliac,” she said. “Each time they told us it was a boy, we had them tested so we could start learning what to do.”
Bates and her husband, Michael, even waited for more than 10 years before having a second child because of the fear they’d pass the disorder to one of their children.
“When I was pregnant with Ian, we had the nurse practitioner from the Hemophilia Treatment Center come give a talk to anybody that might have to watch him,” she said. “So many people from work and church showed up to learn how to take care of him, it still makes me tear up to think about it.”
Ian’s condition is currently managed with medication delivered directly into his veins through a chest port.
“That was our choice to not have to start IVs on him every time he needed medicine,” Bates said. “It seemed less traumatic to have a port on him that we could numb with cream than to have us holding him down and infusing him.”
Free-bleeding children can also be subject to strokes if they have spontaneous hemorrhaging in the brain. Even Ian’s port can prove perilous, so regular trips to the hospital are the norm.
“When he gets a fever, we have to go to the hospital because they have to make sure it’s not an infection from the port,” Bates said. “We have had to hospitalize him four or five times over the last three years. When you say it out loud, it is a lot to deal with, but we’ve just gotten used to dealing with it every day.”
Though life for Ian is fraught with caution, his family, friends and caretakers work hard to help him have a normal life.
“We try to anticipate what the problems would be and eliminate those, so he can do what everybody else is doing,” Bates said. “I’m an early childhood development professional. I know how important playing and exploring are, so we’re trying very hard to let him experience all he can. Except for jumping on the trampoline, he does everything that his older brother does.”
On Saturday, Nov. 6, the third annual Race For Ian 5K will take place in Jonesborough.
The road race not only honors Ian for his ongoing battle with the disorder, but serves as a fundraiser for the Tennessee Hemophilia and Bleeding Disorders Foundation.
Seventy-five percent of the proceeds will go toward research while the other portion of the proceeds will be directed toward educational programs.
“We wanted to do the race to make people aware of bleeding disorders and to raise money for a cure, and for education for families like ours because the foundation has been a great support,” Bates said.
The 5K certified course and one-mile fun run/walk begins at Trinity Baptist Church on Headtown Road. Registration begins at 8 a.m. and the race begins at 9 a.m.
For more information, call Michael Bates at 767-6814 or visit Runtricities.org.