Getting In The Game, And Finding Our Community

This article was originally published in our Fall 2026 Bleeding Times Magazine. See the entire magazine by clicking here.

Author: Sara Rotjan

As a child, my father, uncle, and cousin all had Hemophilia B. My father has a relatively mild form, so regular transfusions were not something I witnessed often growing up.

When my son, Shane, was born in 2017, he became the only child of his generation in our family with Hemophilia B. Having a child with hemophilia gave my husband and me an entirely new perspective on parenting. Our daughter, born in 2014 without a bleeding disorder, had given us a sense of what “typical” parenting looked like—so this was new territory for us. We approached life with a bit more caution, while still striving to keep things as normal as possible.

Growing up, my family was not involved in the bleeding disorders community, so this was also new for me. That changed in May when we attended the Junior National Championship (JNC) Getting In The Game outside of Las Vegas—the first and only nationwide sports experience exclusively for kids with a bleeding disorder. Shane was selected to participate by the New York City Hemophilia Chapter after we applied to attend last fall.

At the JNC, for the first time, Shane met other kids who had hemophilia just like him. That moment was powerful. Before then, he had never met another child with a bleeding disorder. Spending the weekend surrounded by families who truly understood this experience was unlike anything we had known. The sense of community, the shared stories, and the support were remarkable. Shane connected with kids who, like him, proceed with caution—but still live life to the fullest.

As both a parent and the child of someone with hemophilia, I found my community too. I connected with other parents who understood my concerns without explanation. For the first time, I felt fully seen and heard.

During the weekend, each child had the opportunity to participate in golf, baseball, basketball, or swimming. Shane, an avid baseball player, gained so much from the experience. He learned the importance of stretching, teamwork, camaraderie, and looking out for one another. At one point, when another player experienced ankle weakness, the response from organizers, parents, and kids was immediate and collective. It wasn’t about stepping in for the parents—it was about shared understanding.

This experience reinforced for me the power of community, listening, and shared experience. While Shane didn’t win the baseball championship during the JNC, he had an incredible time.