TEEN: I’ve Got a Bad Feeling About This…And That’s Awesome!
By Renae Baker
“Ever since I was little, I’ve wanted to be an actor or director, but now – with the pandemic – I don’t know,” Dylan says. It’s true that the entertainment industry was hit hard, but where there’s a will, there’s a way. And Dylan has the spirit to apply the same can-do attitude he practices daily, living with “really severe hemophilia B,” to his passions.
For as long as he can remember, Dylan has been role playing.
“Mostly superheroes, Sponge Bob and Star Wars characters,” he admits. Though he is a self-professed introvert, many of Dylan’s classmates consider him a superhero. During his 16 years, he’s had seizures, blood transfusions and life-threatening anaphylactic reactions to medication. He’s had four port surgeries due to recurring infections. He’s had ankle and knee surgeries. At times, he was hospitalized for pain management. Despite the torment and disruptions in his life, Dylan has a reputation for being an exceedingly happy person. Perhaps his superpower is the ability to focus on the positive.
That’s no small feat when one considers the “frequent flyer miles” Dylan has racked up as a guest of The Phoenix Children’s Hospital. “I basically had two homes when I was little: here and the hospital,” recalls Dylan from his Arizona family dwelling. It seemed to him that he spent as much time, or more, in the hospital as he did at home with his family. He spent birthdays and holidays there. He did his homework there. One year, he created a solar system, for a school art project, which hung above and around him from the hospital ceiling. His friends sent him light saber and other Star Wars-themed cards, which helped Dylan feel connected to them while he was away.
Another positive focus into which Dylan has leaned is music.
“I used to play violin, but I kept getting shoulder bleeds.” Now, he sings in the mixed choir at school, and sometimes picks up his Aunt Melissa’s guitar. Aunt Melissa has inspired Dylan with her musicality and drive to express herself through music.
2011 was a red-letter year for Dylan and his family. “A year never to be forgotten,” as he calls it. Dylan was six, and he spent so much time in the hospital that neither he nor his mom, Michelle, can remember how many trips they made. They agree that it was upwards of 20 visits, with at least 10 of them being hospital admissions. But 2011 was also the year that Dylan’s family discovered The Coalition for Hemophilia B and won the lottery to the Coalition Symposium which was being held in New York City. The Arizona native found the early March temperatures in the City “really cold,” but the experience very exciting. They got to see Carnegie Hall, where Aunt Melissa sang in 2001.
2011 was also the year that Dylan was given a Make-A-Wish experience. What did he wish for? “A Jedi experience,” Dylan reveals. “It was at Disney World, and I got to meet the voice actors for Obi Wan Kenobi, (James Arnold Taylor, from the animated features,) C-3PO (Anthony Daniels, from the films and TV shows) and Ahsoka Tano, (Ashley Eckstein.)”
“I was sitting, talking to my dad,” Dylan remembers, “And all of a sudden, I heard this voice in my ear, and – it was Obi Wan!!! He said, ‘I have a bad feeling about this.’” The decade-old memory is still fresh and thrilling to him. The stars of Star Wars sat down and hung out with Dylan.
Perhaps it was this experience, hanging out with these heroes, that gave him the courage to begin learning to self-infuse at age seven. Through The Coalition for Hemophilia B, Dylan was able to meet another role model, James Patrick Lynch, who wrote and directed HEMOPHILIA THE MUSICAL in New York City in 2018. Last year, Dylan auditioned for and was cast in the pandemic adaptation, HEMOPHILIA THE ZOOMSICAL, also directed by James Patrick Lynch. The experience demanded discipline, early, long hours of rehearsal and sometimes pushing through the pain of bleeds during rehearsals. Dylan put his music-reading skills to work, observed the other actors and Lynch and found the experience “very interesting!”
Through the Coalition, Dylan had the opportunity to meet and hang out with Chris Bombadier, the mountain climber who was the first person with hemophilia B to climb to the summit of Mt. Everest. Bombadier was one of many who has given Dylan the best advice he’s ever received – “Never give up on your dreams.” To that end, Dylan aspires to put his talent, life experience and positive attitude to good use by becoming a motivational speaker in hospitals, once the pandemic passes and guests are allowed to visit again. He wants to tell his own story and emphasize to other young people how important it is to take their medicine. He wants to encourage them to persevere through their rough times by sharing the stories of the tough times he has been able to get through.
Dylan says The Coalition for Hemophilia B has given him awesome moments. In addition to the trips and meeting inspirational people, he loves meeting all the hemophilia B patients. “I knew a lot of A’s, but it was through The Coalition for Hemophilia B that I first met B’s. The men were so encouraging. I like how they called me their ‘little B Brother’, and gave me advice about how to take care of myself. It felt like family.”
For Dylan’s eleventh birthday, all he wished for was to get his port out and self-infuse into his arm from then on. He met that goal, and although he still struggles now and then, he perseveres. He has it on good authority that if he sets his sights high and perseveres, he will reach summits and hang out among the stars. Dylan recalls, through laughter, his many camp experiences where he found himself in the infirmary or the hospital, and how he continued to come back to camp, even winning awards for self-infusing and his positive spirit.
His best advice to other teens? “Just keep trying different things and see what you’re passionate about.When you discover that thing that you’re passionate about, go for it! Even if you get knocked down, don’t give up, get back up.”