Hemophilia Treatment Center: The Bradys' Story | Cincinnati Children's

Описание: http://www.cincinnatichildrens.org

When they were thinking of starting a family, Dana Brady and her husband, Ryan, knew there was a 50-50 chance she could pass on a rare hereditary bleeding disorder to her sons.

Dana’s dad had Hemophilia B, which meant his blood could not properly clot to control bleeding. That did not stop him from a life of adventure, including becoming a jockey racing horses at Turfway Park.

Dana Brady, Mom and Hemophilia B Carrier: “He did it all, and he has lived a wonderful life.”

Though Dana didn’t have symptoms herself, she was a carrier. And it made decisions about having kids tough. She and Ryan decided to have biological children anyway.

Two of their three children do have hemophilia, and they are among 400 kids with blood disorders that Cincinnati Children’s sees each year.

Dana: “It doesn’t really affect our daily lives, however, it affects my daily life because I live with mom guilt of the whole situation of passing on hemophilia, and I live with extreme worry of what’s going to happen to them.’”

They’ve been frequent flyers at Cincinnati Children’s at the Hemophilia Treatment Center, where they’ve found not just diagnosis and treatment - but also support.

Cristina Tarango, MD, Medical Director, Hemophilia Treatment Center: “We feel that there’s more to treatment of hemophilia than just giving medicines. We feel education is a big part of what we do at Cincinnati Children’s. We also like to support our families. So we have wonderful social workers and psychologists who help our families and our patients cope with their hemophilia. And then we like to make sure that we have various support groups for our families and patients and let them know that they can live perfectly normal lives.”

Even as active boys.

Dr. Tarango: “I think our goal has been for a cure for hemophilia. But I think the most important right now for our team is to make sure that patient’s quality of life is what it needs to be.”

For the Bradys, that means embracing activity.

Jaxson Brady, 8, Patient with Hemophilia B: “I like to ride my bike. I like to ride the dirt bike. I like to ride my electric scooter. I like to ride my Segway.”

They’ve learned to monitor bumps and bruises and educate school teachers and nurses about the risks of uncontrolled bleeding.

Dana: “Our hopes and dreams for our kids is that they live a normal life. We’re trying really hard to not put them in a bubble. They play baseball, and they play soccer and basketball. And we really want them to just be normal boys, whatever that looks like.”