Cottonwood Heights teen performs in New York to raise awareness of hemophilia
Feb 05, 2019 01:59PM
By Josh Wood
Samson Sperry (center) on stage in “Hemophilia: The Musical” last November. (Breaking Through, by permission)
By Joshua Wood | [email protected]
Samson Sperry would like the world to know that kids with hemophilia can do a lot more than people think. To get the word out, and to help prove his point, Samson performed with other kids from throughout the country in a landmark Broadway-style production in New York City called “Hemophilia: The Musical.”
Samson, an energetic 14-year-old from Cottonwood Heights, was one of 25 kids from across the country selected to participate in the program. Like the kids in the production, Samson suffers from hemophilia, a bleeding disorder in which a person’s blood doesn’t clot normally. People with hemophilia have to take precautions to avoid certain injuries, but that doesn’t stop them from doing a lot of things other people do.
“I learned that the arts, like theater, are really empowering,” Samson said. “We are limited with sports, but the arts can bring that aspect of us out.”
Samson’s sister forwarded an email to him with details of a contest. Kids with bleeding disorders were asked to write essays about their experiences and the challenges they face in life and why they want to perform in a play about their conditions. Samson wrote about his challenges and how he always wanted to perform on Broadway. He even sang 32 bars of music as part of his entry.
After he was chosen for the program, Samson got a surprise when he first read the play’s script in New York. Not only were the contestants’ essays used to select the program’s participants, they were also used to compose the script.
“I thought that was really clever,” Samson said. “All of the lines were personal to all the people doing it. There were some really deep thoughts.” The play consisted of several situations depicting the realities of living with bleeding disorders like hemophilia.
Preparation for the performance was intense, and helped the kids bond quickly.
Samson met his costars in New York last November. They were welcomed by the program organizers as well as members of the Broadway cast of “Wicked.” The play’s director, Patrick James Lynch, told Samson and the others how he had lost his brother to hemophilia.
During their week in New York, Samson and his costars attended classes on health issues affecting them and did a lot of rehearsing to get ready for the performance.
For Samson, it was an amazing experience. “My dream to be on Broadway kind of came true,” he said. “It was great. I love to sing and dance and act, and I got to do all three.”
The project was designed to teach people about hemophilia and to help kids suffering from bleeding disorders know they are not alone. Another performer in the play, Khalil Dance, said, “Most of all I want to meet people like me. I’m always the odd one out at school and sometimes it is pretty lonely.”
Participants like Samson got to spend time with other kids who have to deal with the same health and social issues they face. The connections they made helped them feel understood and part of a community. It also helped them find the words they need to explain their condition to others.
“I don’t want people to think that we’re super limited,” Samson said. “We just have to limit ourselves in some ways. It just means that we need to be more aware of our surroundings.”
The play was produced by Believe Limited and sponsored by BioMarin in collaboration with the UnLonely Project from the Foundation for Art & Healing. People can learn more about the project at www.breakingthroughhemophila.com.
For Samson Sperry and his two dozen costars, it was the experience of a lifetime.
“I made lifelong friends,” he said. “We had a lot of fun and now have a lot of deep relationships and understanding.”