She Got Seizures At 17 Months Old. So Her Dad Wrote A Musical About Epilepsy And Empathy

LOS ANGELES – In March 1998, Ben Decter drove from Los Angeles to Tijuana to get medication for his 17-month-old daughter Addie. He had “catastrophic childhood epilepsy,” the neurologist had told him, and a medication not yet available in the United States was his best option to treat his continued seizures.

That terrifying moment is currently being relived five times a week as part of a new musical, one that is deeply personal and nearly 20 years in the making. Titled “It’s All Your Fault, Tyler Price!”, the family-friendly performance is entertaining, empathetic, and educational about epilepsy, a condition that remains stigmatized despite its ubiquity. And its world premiere production, which runs through Dec. 15 at the Hudson Backstage Theater in Hollywood, is financed in large part by a pharmaceutical company.

It is an unconventional financing model for a musical theater work. But for a unique show with a unique origin story, it might be the right recipe.

“The world of entertainment has been changing, and that includes all the ways that musicals, television and movies typically get financed,” said show director Kristin Hanggi. “It’s really just the idea of ​​partnering with people who are aligned with the same mission as you and want to serve the same community as you. And when you’re united on that level, it feels undeniable.”

‘I couldn’t talk about it’

At first, Decter, an Emmy-winning composer who has composed music for television shows such as “Lucifer,” “Lethal Weapon” and “CSI: Cyber,” didn’t want to talk about his daughter’s seizures. Not even with his college sweetheart, Jackie Sloan, or his youngest son, Leo Decter.

“I felt a lot of anger and sadness and isolation, but I just internalized it and went to the gym or went for a run,” Decter said. “I couldn’t talk about it, but I started writing songs on the piano and it felt really good.”

Decter played his compositions for Sloan, who then sang them with him. “It was his window to express how he felt, like he could say things in songs that wouldn’t be okay to say out loud,” he recalled.

“Although it was painful, I felt encouraged and hopeful for us that he was finding a way to stay present and figure out how he felt. (These diagnoses) are very hard for families and most couples do not make it through.”

In 2007, a neighbor heard Decter sing these songs and introduced him to Hanggi, who had just debuted in the shows “Bare: A Pop Opera” and “Rock of Ages.” He immediately took the material and continued developing it with Decter.

“One of the things that caught my attention about the lyrics was that some of them were from a child’s point of view and expressed emotions that I hadn’t heard before,” Hanggi said. “The topic was very heavy, but there was also a lot of humor, laughter and lightness. I thought: There’s something here, we just have to figure out how to dramatize this.”

Mission accomplished. “It’s all your fault, Tyler Price!” features four characters who are thinly veiled versions of the Decters: an emotionally evasive composer father, an exhausted corporate lawyer mother, a sweet older sister with epilepsy, and a charismatic younger brother charged with taking care of her.

The inciting incident on stage (a school bully makes fun of the young girl’s condition and her brother punches him in the face in revenge) is inspired by a true anecdote. “A friend of mine was at our house and made an insensitive joke about epilepsy and pretended to have a seizure,” Leo explained. “I was really offended, so I kicked him out.” (There was no fist-shaking in real life, however.)

The show sets to music some seizure statistics, such as the fact that 1 in 26 people will have epilepsy in their lifetime, and that seizures can vary in appearance, with manifestations as muted as a sudden head drop. A musical number even describes first aid tips for seizures and leads the audience to repeat safety steps through a call-and-response gospel song.

“This (program) really flourished in advocating for this destigmatization of what epilepsy is,” said Addie, who inspired the program. “I hope that anyone who sees this, whether they still have seizures, no longer have seizures, or know someone who has seizures, feels seen and knows they are not alone.”

“Tyler Price!” also portrays how a child’s diagnosis can affect everyone in a family unit: the parents argue over their daughter’s request for a bat mitzvah amid their struggles to pay her medical bills, and her brother longs for the same paternal attention as his sister always seems to receive. Most poignantly, it states that open communication and confident self-expression are a vital part of everyone’s treatment.

“It’s so powerful in the show when the father just tells his son that yes, he’s scared,” Hanggi said. “We, as parents, think we’re not supposed to share our fears with our children, but in reality, it’s more helpful to talk about difficult things and be intimate about your feelings as a family, rather than covering things up or trying to pretend they aren’t real. You are not there. That challenge is universal, whether or not you have first-hand experience with epilepsy.”

After more than a decade of workshops produced by Dodgers Theatricals, Pasadena Playhouse, IAMA Theater Company and Lythgoe Family Productions, Decter and Hanggi self-produced a reading of “Tyler Price!” last year at the Garry Marshall Theater in Burbank.

“A piece will tell you when it’s ready to go on stage because that’s when people start giving you money,” Hanggi said of the very warm reception to that reading. “People are starting to write checks and saying, ‘What can we do to help?’ All this support exploded and we could feel that energy that it was time.”

News of the show reached UCB, a Belgium-based pharmaceutical company that produces several drugs to treat epilepsy. UCB had recently contributed funding to “Under the Lights,” Miles Levin’s award-winning short film that has since been made into a feature film with Lake Bell, Randall Park and Nick Offerman.

“We are always looking for new ways to help address and support the community of those living and caring for people with a debilitating and complex form of epilepsy, and there is often no better medium than telling stories,” said Brad Chapman, US director. epilepsy and rare syndromes at UCB, which provided most of the capital for the debut of “Tyler Price!” production.

“For us, it is a natural opportunity to potentially reach more people than ever before, in what could be described through these platforms as one of the largest epilepsy awareness campaigns.”

‘Everything is still fine’

The whole series of “It’s all your fault, Tyler Price!” It is visually designed to be “seizure safe” as intense light sequences and patterns can sometimes trigger reactions. The production has already welcomed attendees of all ages for their first live show experience. (A completely relaxed performance is planned for the matinee on December 14).

Ben Decter watched a recent preview performance from various seats throughout the theater and then chatted with families; It is true that you are “much better” at expressing yourself and communicating your feelings to others. His son Leo, now 25, plays guitar in the show’s band.

“Seeing a child play a younger version of yourself is a real journey, but I love being able to help my father in this meaningful way on this project,” Leo said. By performing her father’s songs five times a week, “I have a lot more empathy for my parents now because I felt how difficult it must have been for them.”

Meanwhile, Jackie Sloan moved from bankruptcy law and corporate reorganization to founding and managing Children’s Ranch, an Atwater Village organization that offers therapeutic animal care programs for youth of all abilities and circumstances. She was inspired to do so by seeing how well her daughter, Addie, who was diagnosed with Lennox-Gastaut syndrome at age 4, responded to caring for animals as a child.

Addie, now 28, is an instructor at the ranch and helps teach lessons to about 100 families a month on caring for rabbits, chickens, horses and guinea pigs. “She is a force and I learn from her every day,” Jackie said of working alongside her daughter, who hasn’t had a seizure in years. “Addie has this way of seeing things through the student’s eyes and helps us understand how we can best help them.”

Sloan described the Children’s Ranch not as a place that tries to change anyone, but rather as a place where children and teens can get to know themselves better and show themselves more confidently as they are. So in some ways, the ranch is a lot like the musical itself.

“The program doesn’t say everything will be perfect,” he said. “It really says that even if things are hard, everything is okay and we’re going to have a great life together.”

© 2024 Los Angeles Times
Distributed by Tribune Content Agency, LLC

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