Finding Our Community

Sugeidi and Luis Rosario have three children–Emilio, Jacob, and Anna. Their oldest son, Emilio, was diagnosed with severe hemophilia at the age of 5, after he fell and injured his leg. Below is an interview with Sugeidi, who shared with us how they first became involved with the New York City Hemophilia Chapter (NYCHC).

How and when did you find out about NYCHC?

Emilio was diagnosed with severe hemophilia A when he was 5 years old. It started with internal bleeding in his leg, which led us to take him to the emergency room at Mount Sinai, where he was diagnosed. During our stay, we met the nurses from the HTC, the social worker, and all the staff in charge of his care. We received a lot of information to help us understand our son’s bleeding disorder. One of the brochures we received was about NYCHC.

What do you like most about NYCHC?

The variety of events they offer, especially the events in Spanish. We’ve been able to meet other families we can talk to in our own language and share ideas with. The interactive events are my favorite. I remember one event where we sat at a round table and shared our experiences, we learned so much from it.

Which events have been your favorites?

The first event we participated in, Education Day, when Emilio was very young, was very important to us because we felt welcomed and truly part of the community. That day, we met other families and slowly began learning more about bleeding disorders, and what our life would be like as we navigated this diagnosis. Since then, we have attended the Annual Unite for Bleeding Disorders Walk, and many different events for the Latino Community. All of these events help us meet other people in the bleeding disorders community, and we really like connecting with new families.