Our Journey Finding NEHA

Our Journey Finding NEHA

Interview With Melissa Rodriguez
By Nelly Miranda, NEHA Latino Community Consultant
Posted: February 21, 2023. Originally printed in NEHA’s Fall 2022 Newsletter.


Our priority at NEHA is to serve the bleeding disorders community as best as possible. Every year, we host in-person and virtual events in Spanish to help Latino families in New England stay updated about caring for their bleeding disorder, and to help them build connections with other Spanish-speaking families in our community. NEHA’s Latino Community Consultant, Nelly Miranda conducted the following interview with Melissa Rodriguez to learn more about her family’s bleeding disorder journey. The interview was conducted in Spanish but has been translated into English below.

How did you find out about your son's hemophilia diagnosis?

Since Xander was a baby, I noticed that he would get a lot of bruises. I talked about it with the pediatrician, but he initially told me that there was nothing to worry about. It wasn’t until 2020, when he was 4 years old, during a regular checkup, the pediatrician did different blood tests and they detected that he has moderate hemophilia A. There is no one in my family with hemophilia, so everything has been new to me. I didn’t know anything about bleeding disorders. Doctors and nurses have guided us from the moment he was diagnosed.

How did you find out about NEHA?

Our nurse at Connecticut Children’s Medical Center referred us to NEHA. She explained to us the programs and activities they have for families living with a bleeding disorder. Unfortunately, my son was diagnosed during the COVID-19 pandemic, and the events had been mostly virtual, but we have enjoyed our time participating so far, and we look forward to joining NEHA’s in-person events soon.

Did you know other families with a bleeding disorder before participating in NEHA events?

We didn’t know any families before participating at the events with NEHA. Everything has been new, and we did not know anyone. But participating in NEHA’s events has given us the opportunity to hear other families’ experiences and learn more about bleeding disorders.

What did you think of NEHA’s Family Camp and what did you enjoy the most?

It was a great experience for our family. There were many very well-organized activities for families and children. We had the opportunity to live very closely with a family that had a child one year younger than ours. With their child’s companionship our son enjoyed the camp to the fullest. They brought nurses from different centers who taught us how infuse and we had the opportunity to practice with the practice kits that they brought. I hope to see more Latino families at Camp in the future who also speak Spanish.

What would you like to hear or learn with NEHA?

I would love to see more events in Spanish happening in NEHA so we can meet more Latino families. I grew up in Puerto Rico and I enjoy being able to communicate with other families in Spanish. English is my second language, but I love the sessions in Spanish with Latino families.

I would like to see topics related to how to have a closer relationship with the school and the school’s nurses, because it has not been an easy process for me. I’d also appreciate help explaining a bleeding disorder to family and friends. These are topics that I don’t find easy to communicate, and having them in my native language would help me, and I think other Spanish-speaking families, understand better.