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Hemophilia ... the musical? Utah teen heading to New York, putting disorder in the spotlight

SALT LAKE CITY — After losing his 18-year-old brother to a bleeding disorder, actor and director Patrick James Lynch harnessed his background as a performer and producer to help young people like his brother who were falling through the cracks.

“For the last five years, my company, (Believe Limited), has been committed to creating programs, events and unique experiences to build (a) community, particularly around young people affected by bleeding disorders,” Lynch said in an interview with the Deseret News.

Lynch, who has hemophilia himself, is very involved in the hemophilia community, hosting a popular web series called "Stop the Bleeding!" as well as a podcast called "BloodStream."

Patrick James Lynch, workshop director of Breaking Through Hemophilia.
Patrick James Lynch, workshop director of Breaking Through Hemophilia.
Lotus Eyes Photography

But perhaps his greatest venture is one that is coming to fruition this month. With the sponsorship of BioMarin, Lynch will direct theBreaking Through! Musical Theater Intensive, a three-day musical theater workshop in New York City where 25 teens from across the country who suffer from bleeding disorders will participate in a six-song musical titled “Hemophilia: The Musical.” The musical will be live-streamed from their Facebook page on Nov. 12.

Lynch explained that this workshop will not only teach performance skills, but he hopes it will also equip kids with management tools so they can feel more comfortable as their own advocate, learning how to speak to school administrators and coaches about their condition.

The songs for the musical are inspired by the participants’ essays, and the musical's themes draw from their real-life struggles living with hemophilia, which include: dealing with stigma, being ostracized and bullied and even how tell a date you have hemophilia.

Cottonwood Heights native Samson Sperry knows well the misconceptions associated with hemophilia, having been diagnosed at age 5.

“It isn’t this disease or defect that is going to kill you if you get a paper cut,” Sperry told the Deseret News.

After submitting a short audition video and writing a personal essay, Sperry, a freshman at Hillcrest High School, was one of 25 students in the nation selected to participate in the musical.

“I honestly wasn’t expecting to get picked,” Sperry said. “When you have a bleeding disorder … most of us don’t play sports, (but) I’ve always loved singing and dancing (and) that has become … a sport for me … and a way to express (myself).”

Utahn Sam Sperry playing Lord Farquaad in "Shrek The Musical." This clip served as his audition video for "Hemophilia: The Musical."

Sperry — who has been in “Oklahoma!,” played Young Simba in “The Lion King,” Lord Farquaad in “Shrek: The Musical” and is currently in Hillcrest's ensemble for “Hairspray” through Nov. 19 — is thrilled at the opportunity to participate in such an innovative experience.

“I’m excited to spend time with 24 other kids with bleeding disorders and being able to work with these professional directors. It’s a really kind-hearted thing of them … to go out of their way and (put) time aside to work with us,” Sperry said.

For Lynch, directing this musical is anything but inconvenient.

“I grew up just wanting to play basketball,” Lynch said. “I had a host of really significant challenges with my hemophilia growing up — I was out of school all the time, I was suffering from really bad bleeds often (and) I was missing out on social activities.

"Hemophilia: The Musical" will feature 25 high school students from across the country who have hemophilia or other bleeding disorders.
"Hemophilia: The Musical" will feature 25 high school students from across the country who have hemophilia or other bleeding disorders.
Provided by Carly McLean

“A kid who is affected by a bleeding disorder needs other things they can be incentivized to consider as forms of growth and socialization and ways to think outside of their school and prescribed environment," he continued. "And when I found the arts, I realized that.”

Lynch’s goal with this musical theater intensive is to end the overly frail and vulnerable stigmas associated with hemophilia by encouraging kids to find the arts, just like he did.

“Hemophilia takes control away,” Lynch said. “And if you can channel yourself toward the arts and be like, ‘You know what, I'm more than that. And I'm going to decide who I am. And this is how I'm going to put it in the world and hemophilia can’t take that away from me’ — that is empowering.”

Lynch was reminded of that empowerment while reading Sperry's essay — one that stood out for the director. Lynch recalled a specific line that, in his mind, captured the entirety of what the arts can do for kids with hemophilia.

“One of the lines was, ‘I was shy kid who was always at doctor's appointments until everyone saw me onstage as the funny Young Simba.’ That is the whole point right there. Sam couldn't have summarized the entire reason we're doing this and the entire reason that the arts matter any better than that sentence.”