BALDWINSVILLE — Most toddlers take their fair share of tumbles when learning to walk and play, but Maria and Michael White suspected their then-3-year-old son Mikey had more bumps and bruises than his peers.
The Whites found out their son has hemophilia B, a genetic bleeding disorder that causes a deficiency of the blood clotting protein factor IX. It is less common than hemophilia A, which causes a deficiency of factor VIII.
“We sort of suspected it in Mikey because he had some pretty significant bruising and bleeding in the three years prior,” Maria said. “Eventually I went to the pediatrician and asked for testing.”
Now 16, Mikey is an athlete and activist. The Baker High School swimmer recently received the Ryan White Youth Award from the National Hemophilia Foundation. The award is given to a person between the ages of 8 and 25 who “has helped educate others both within the bleeding disorders community and among the general population by increasing awareness and understanding.”
Ryan White — no relation to Mikey — was a teenager with hemophilia A. Ryan contracted HIV through contaminated factor VIII infusions and became an activist for HIV/AIDS education and awareness. He died of AIDS in 1990 at the age of 18.
“I’m proud that I received this award,” Mikey White told the Messenger.
“He was very humbled by the award because Ryan White has books about him, and now Mikey has the award named after him,” Maria said.
Maria and Michael White nominated their son for the award.
“Hemophilia has affected our family, and he really rises to every occasion regarding hemophilia, regarding friendship, regarding academics,” Maria said.
The Whites’ younger son, Westin, also has hemophilia B. Mikey has been a role model to his 9-year-old brother by encouraging him during treatments, looking out for signs of bleeding and helping Westin wrap injured joints with an ACE bandage.
“Mikey sets the standard of being calm and brave for his younger brother,” Maria said.
“He’s afraid of needles like I was when I was little. It’s scary to have one of your parents poke you with a needle,” Mikey said.
Mikey can now administer his own weekly infusions of Alprolix, an injectable medication that contains factor IX. If he suffers an injury, he requires an on-demand infusion to prevent hemorrhage.
“It’s definitely a challenge,” Mikey said. “It adds an extra layer to day-to-day activities that requires communication with my medical care team, my parents, now coaches.”
While he must be careful to avoid falls or other injuries, Mikey is able to do most things any other teenager can do. He took up swimming four years ago and participates on the school swim team as well as a private club team.
“Often when you have a child with hemophilia, you don’t really know what to do with them or you’re scared,” Maria said. “He’s trying to inspire people to know that you can still do non-contact sports.”
According to the NHF, physical activity has several benefits for people with hemophilia, including improved range of motion and joint stability.
“I do strength training to prevent injuries and compete at a high level. The stronger your muscles are, the less likely you are to strain something,” Mikey said.
For the past two years, Mikey has participated in NHF Run Red, which raises money for each mile a person walks or runs. He also educates others about hemophilia, including those in the swimming community.
As he enters 11th grade at Baker, Mikey is dreaming of swimming at the collegiate level. He is looking for a program whose coach will understand not only the challenges he faces, but also his potential.
“As he heads off to college, he doesn’t want future coaches to be scared of him. [They can be] hesitant to take on a child with hemophilia. He’s never missed a swim meet because of a hemophilia injury,” Maria said. “We do need to find the coach who will take the time, but in turn they’ll have a phenomenal athlete because Mikey’s drive is like no other.”
Mikey offered this advice for others who have hemophilia.
“Accept yourself. It’s a problem you were born with; you can’t get rid of it, but you can prevail through it,” Mikey said. “Obviously there’s still limitations, but you just do what you can do.”
To learn more about hemophilia and other inheritable blood disorders, or to donate toward research and awareness, visit the National Hemophilia Foundation’s website at hemophilia.org.
