Natalie Rubin says she lives by a personal mantra.
“Although having an illness limits you,” she says, “for every one thing you can’t do, there are a million things you can do.”
The Freedom High senior has a blood disease called Von Willebrand disease, a genetic disorder caused by a low level of clotting proteins in the blood. It was discovered when Natalie was 12. She got really sick, and the medications prescribed to her thinned her blood, resulting in her entire body being covered with bruises and petechial, or small red or purple spots caused by bleeding into the skin.
Now 17, Natalie has lived with the disease ever since. She tries to focus on things she loves, such as music and her position as a woodwind captain in Freedom’s band, playing tenor sax in marching band and bass clarinet in concert band.
She has to be extra cautious, though, because she bruises so easily, and her disorder can mean her blood doesn’t clot.
“When they throw rifles in marching band, I always think that I have to be very careful,” she says, as a bump to the head could be catastrophic for her.
While Natalie recognizes her limitations — she can’t play lacrosse or give boxing a try, both things she says she’s wanted to do — she looks for opportunities to live out her personal mantra and focus on the things she can enjoy to the fullest.
When the opportunity to audition for a unique opportunity to be in a New York City musical focusing on teenagers affected by blood disorders such as hemophilia and Von Willebrand disease, Natalie submitted an audition video and an essay, where she shared her personal mantra.
Although she called it “a long shot,” Natalie was one of only 25 teenagers from across the U.S. who ultimately were chosen for the performance, called “Hemophilia: The Musical.”
Their essays were the inspiration for the songs that were written for the production.
Natalie’s aforementioned personal mantra was used in the production.
On Nov. 9, Natalie and the other teenagers arrived in New York City. and the spent some time touring the city, as well as many hours in rehearsals.
They had prepared at home, where their rehearsals were spent working with a professional voice coach, choreographer and others to bring their voices together for the one performance of the musical, held just a few days later — on Nov. 12, at the New World Stages in Manhattan.
“It was such an amazing, extravagant trip,” Natalie says, explaining that it was provided to the students at no cost to them, and included a stay in NYC’s Fashion District and being shuttled around the city to tourist destinations such as Times Square, where Natalie and the other teens’ names were highlighted on one of the city’s famous huge billboards, advertising the musical.
She says her favorite thing about participating was all the people she met, and she took away from it a message of how precious life is.
As a high school senior, Natalie is looking toward her future. She says she plans to major in medical genetics.
“Growing up with a health condition, it makes you feel different,” Natalie explains. “Then, maybe you go to camp and meet people like you and feel like you fit in, but you realize you’ve bonded over a sad thing. I want to cure something so kids don’t have to feel like that.”
She volunteers as a youth ambassador for the Hemophilia Foundation of Greater Florida, which serves people with bleeding disorders such as hemophilia, Von Willebrand disease, and others. She says the foundation is a great source of support to her.
Natalie adds that her participation in “Hemophilia: The Musical” helped her think about what it really means to be a teenager living with a bleeding disorder. She explains that she is part of the first generation to have access to blood factor products, which are lifesaving to people with conditions like hers.
“I’m not lucky that I have this illness,” Natalie says, “but I am lucky that I have a full life and I can live with it. The last line of the musical is, ‘We’re still here today.’ It’s powerful because we’re here in honor of all the people who can’t be here because of their bleeding disorders.”
To view the performance, visit BreakingThroughHemophilia.com.
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