Tyler Selby is a happy 5-year-old who loves reading and math, people and conversation. He’s also an advocate for kids like him with bleeding disorders.
Born Feb. 25, 2020, Tyler experienced irregular bleeding from standard newborn procedures. Even when Tyler went home from the hospital, the bleeding continued. Then, the left side of his body started turning blue. “We had his newborn appointment in the pediatrician’s office, and we thought they’d wonder what we were doing to our baby,” Brittany recalled. “My husband, Adam, and I were new parents. It was an overwhelming time, because we knew something was wrong with Tyler.”
A fast path to answers
Tyler’s pediatrician ordered a blood test and called with results the next day. “He said the test showed an issue with Tyler’s bleeding, and we needed to get to a hospital,” Brittany said. “We live in Richfield, so we asked to be referred to Akron Children’s, because it was a little closer than the Cleveland hospitals. Looking back, I wouldn’t change a thing about that decision.”
As instructed, Brittany called the Akron Children’s Showers Family Center for Childhood Cancer and Blood Disorders. “I asked if I need to make an appointment,” she said. “They said no – just pack a bag and get Tyler here right away.”
Adam met Brittany and Tyler at the hospital. Tyler went through testing, while Brittany looked for answers. “Googling is never advisable in a situation like that, but I did it because it was a sad and scary whirlwind,” she shared. “By the time I was done Googling, I knew what we were getting.”
Dr. John Fargo, former Akron Children’s hematologist, delivered the diagnosis of hemophilia A the following morning. Irene Boehlefeld, nurse program coordinator for the Akron Children’s Hemostasis and Thrombosis Center, joined the discussion. “It was intense because we needed to make some decisions for this little baby we’ve only had for a few days,” Brittany said. “But the support Dr. Fargo and Irene provided was an absolute wash of relief. They were so calm and easy to talk to. Irene held my hand and reassured me that everything would be OK.”
Akron Children’s comprehensive care
Hemophilia A, also called “factor VIII deficiency,” is a rare genetic disorder. It’s caused by a missing or defective clotting protein, so blood doesn’t clot properly to control bleeding.
Akron Children’s is recognized as a regional, comprehensive hemophilia treatment center (HTC). The team – including board-certified hematologists, nurses, an orthopedist, physical therapist, dietitian and social workers – provides the most updated treatment for bleeding and clotting disorders.
Tyler is an active boy who loves reading, math and playing T-ball.
The bonds between the Selby family and their care team formed quickly. “When Tyler was first diagnosed, they told us that they’re going to be like extended family because we’re going to see them all the time,” Brittany recalled. “They cared as much about Tyler’s well-being as Adam and I did.”
The Selbys advocate for the bleeding disorder community
At the first visit with the hematology team, the Selbys learned about the Greater Ohio Bleeding Disorders Foundation (GOBDF). “When I face a difficult situation, I often look to get completely enveloped, learn as much as I can and get involved,” Brittany said. “It’s a coping mechanism, and to me, it just made sense to join the local chapter. Now, I’m on the GOBDF board.”
Brittany quickly realized how many people need educated about bleeding disorders, from insurance companies to state and federal lawmakers. “In 2024, Tyler and I participated in a state advocacy day in Columbus,” she said. “It was an opportunity to have conversations about legislation that impact folks in the bleeding disorder community.”
Tyler and Brittany prepared a book with information and photos to share with legislators. “Our table got busy quickly, and the next thing I knew, 3-year-old Tyler sat down with two state representatives to share his book and talk about his bruises,” she said. “It was the most adorable thing! I was so proud that he already ‘found his voice’ to have conversations about what’s going on with him and what he’s doing to make an impact.”
Tyler educated legislators about his blood disorder at a state advocacy event in 2024.
Later this month, Brittany heads to Washington, D.C. for federal advocacy work. She plans on taking Tyler next year. “I wouldn’t sign up for my child to have a rare condition. But finding yourself in the space and having an opportunity to represent your community has been a cool experience,” she explained. “I encourage parents to get involved, particularly in the rare disease space. The more voices that are involved, the more opportunity there is to get people to listen and ensure families are supported.”
Tyler today
Tyler gets weekly injections of medication. Brittany also has a special kit with factor medicine, should he have a bleeding incident, and he has yearly checkups with Akron Children’s to follow HTC guidelines. “He needs to listen to his body and tell us if something doesn’t feel right, but he doesn’t need wrapped in a bubble,” she said. “We tell Tyler that everyone has something, and hemophilia is his something. He’s an amazing kid.”
