She got seizures at 17 months old. So her dad wrote a musical about epilepsy and empathy

In March 1998, Ben Decter drove from Los Angeles to Tijuana to get medicine for his 17-month-old daughter, Addie. She had “catastrophic childhood epilepsy,” the neurologist had told him, and a drug not yet available in the U.S. was their best bet to treat her nonstop seizures.

That terrifying moment is currently revisited five times per week as part of a new musical — one that’s 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, running through Dec. 15 at the Hudson Backstage Theatre in Hollywood, is largely funded by a pharmaceutical company.

It’s an unconventional financing model for a piece of musical theater. But for a unique stage show with a singular origin story, it might just be the right prescription.

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

Faith Graham, center, and the cast of “It’s All Your Fault, Tyler Price!”

(Jim Cox)

‘I couldn’t talk about it’

At first, Decter — an Emmy-winning composer who’s scored TV shows such as “Lucifer,” “Lethal Weapon” and “CSI: Cyber” — wouldn’t discuss his daughter’s seizures. Not even with his college sweetheart wife, Jackie Sloan, or his younger child, Leo Decter.

“I had a lot of anger, sadness and isolation, but I’d just internalize and go to the gym or go out running,” said Decter. “I couldn’t talk about it, but I found myself starting to write songs on the piano, and that felt really good.”

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

“Even though it was painful, I felt encouraged and hopeful for us that he was finding a way to stay present and figure out how he was feeling. [These diagnoses] are so hard on families, and most couples don’t make it through.”

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In 2007, a neighbor overheard Decter singing these songs and introduced him to Hanggi, who had just debuted the stage shows “Bare: A Pop Opera” and “Rock of Ages.” She immediately took to the material, and continued to develop it with Decter.

“One of the things that struck me about the lyrics was that some of them were from the children’s point of view and expressing emotions I hadn’t heard before,” said Hanggi. “The topic was so heavy, but there was also so much humor and laughter and lightness. I was like, there’s something here, we just have to figure out how to dramatize this.”

Ben Decter and Kristin Hanggi created the new musical “It’s All Your Fault, Tyler Price!”

(Robert Gauthier/Los Angeles Times)

Mission accomplished. “It’s All Your Fault, Tyler Price!” introduces four characters who are thinly veiled versions of the Decters: an emotionally avoidant composer dad, a burned out corporate lawyer mom, a sweet older sister with epilepsy, and a charismatic younger brother tasked with taking care of her.

The inciting incident onstage — a school bully makes fun of the young girl’s condition, and her brother vengefully punches him in the face — is inspired by an actual 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 by it, so I kicked him out.” (No fists were swung in real life, though.)

The show musicalizes some seizure statistics, like the fact that 1 in 26 people will get epilepsy in their lifetime, and that seizures can vary in appearance, with manifestations as muted as a sudden head drop. One musical number even outlines seizure first aid tips, and leads the audience in repeating back the safety steps via a call-and-response gospel song.

“This [show] really bloomed into advocating for this destigmatization of what epilepsy is,” said Addie, who inspired the show. “I hope that anyone who sees this, whether they do still have seizures, are seizure-free or know somebody who has seizures, feels seen and knows that they’re not alone.”

Charlie Stover, Jenna Pastuszek, CJ Eldred and Faith Graham play a version of the Decter family in “It’s All Your Fault, Tyler Price!”

(Jim Cox)

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

“It’s so powerful in the show when the dad just tells his son that, yes, he does get afraid,” said Hanggi. “We as parents think we’re not supposed to share our fears with our kids, but actually, it’s more helpful to talk about hard things and be intimate about your feelings as a family, instead of covering things up or trying to pretend they’re not there. That challenge is universal, whether or not you have firsthand experience with epilepsy.”

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

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

Addie Decter and her brother, Leo, at the Children’s Ranch. The two siblings inspired the musical “It’s All Your Fault, Tyler Price!”

(Robert Gauthier/Los Angeles Times)

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

“We’re always looking for new ways to help address and support the community of those living with and caring for folks with a debilitating and complex form of epilepsy, and there’s often no greater medium than storytelling,” said Brad Chapman, head of U.S. epilepsy and rare syndromes at UCB, which provided the majority of the capital for the debut “Tyler Price!” production.

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

CJ Eldred and Charlie Stover play father and son in “It’s All Your Fault, Tyler Price!”

(Jim Cox)

‘Everything is still all right’

The entire run of “It’s All Your Fault, Tyler Price!” is visually designed to be “seizure safe,” since intense light sequences and patterns can sometimes trigger reactions. Already, the production has welcomed attendees of all ages for their first-ever live show experience. (A fully relaxed performance is scheduled for the Dec. 14 matinee.)

Ben Decter watched this week’s preview performances from various seats throughout the theater and chatted with families afterward; he is admittedly “a lot better” at expressing himself and communicating his feelings to others. His son Leo, now 25, plays guitar in the show’s band.

“Watching a kid play a younger version of you is an absolute trip, but I love getting to help my dad in this meaningful way on this project,” said Leo. Performing his dad’s songs five times a week, “I now have so much more empathy for my parents because I felt how hard it must have been for them.”

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

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

Sloan described the Children’s Ranch not as a place trying to change anyone, but more so where kids and teens can get to know themselves better and show up more confidently as who they are. So in a way, the ranch is actually a lot like the musical itself.

“The show isn’t saying that everything is gonna turn out perfectly,” she said. “It’s really saying, even if things are hard, everything is still alright, and we’re going to make a great life together.”

Clockwise, from top left: Ben Decter, Jackie Sloan, Leo Decter, Kristin Hanggi and Addie Decter.

(Robert Gauthier/Los Angeles Times)