“When I make decisions, I have to think about things differently. Am I going to get hurt or not?”

After dribbling a basketball on the wooden floors of his family’s apartment in Chicago, Tristan heads outdoors to play in the snow. For him, the feeling of freedom to do as he pleases has never been something taken for granted as a young person living with a bleeding disorder.
Tristan was diagnosed with hemophilia A as an infant after his circumcision did not heal properly. His parents, Christal and Ron, visited a Hemophilia Treatment Center and learned that with medication, they could replace the missing clotting factor (Factor VIII) with injections. Being an active young person, it’s not just cuts and scrapes that Tristan had to worry about, but the possibility of internal bleeds, which can have more serious long-term consequences.
However, when it came time to treat a bleed, Tristan was steadfastly resistant, through his own will and biology. “It was so hard to get to his veins,” says Christal, recalling the physical struggle to place a needle into the traumatized toddler. To make matters worse, after his first few treatments with factor, Tristan developed an inhibitor—his immune system began attacking the “foreign” factor in his blood, destroying it before it could clot.
With an inhibitor, Tristan needed several injections a day, exacerbating his needle-trauma. There were some trying years, but Christal persisted, balancing her son’s needs with the financial burden that comes with treating hemophilia, until a breakthrough came. Tristan enlisted in a clinical trial where he was able to receive a subcutaneous injection that worked to treat his hemophilia with an inhibitor. He started going to the hospital less, overcame his fear of needles, and was able to get back to living his life—basketball in hand.