How epilepsy musical ‘It’s All Your Fault, Tyler Price!’ came to be

In March 1998, Ben Decter drove from Los Angeles to Tijuana to get medication 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 choice to treat her nonstop seizures.

That terrifying moment is currently being revisited five times a week as part of a new musical – one that is deeply personal and more than twenty years in the making. Titled “It’s all your fault, Tyler Price!” the family-friendly show is entertaining, empathetic and educational about epilepsy, a condition that remains stigmatized despite its ubiquity. And its world premiere production, runs until December 15 at the Hudson Backstage Theater in Hollywood, is largely financed by a pharmaceutical company.

It is an unconventional financing model for a musical theater piece. But for a unique show with a unique origin story, this could be the right recipe.

“The entertainment world is changing, and so are all the ways musicals, TV and movies are typically financed,” says Kristin Hanggi, the show’s director. “It’s really just the idea of ​​working with people who have the same mission as you and want to serve the same community as you. And when you are united on that level, it feels unmistakable.”

‘I couldn’t talk about it’

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

“I had a lot of anger, 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 found myself 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 was feeling, like he could say things in songs that he wouldn’t like to say out loud,” she recalled.

“Even though it was painful, I felt encouraged and hopeful for us that he found 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.”

In 2007, a neighbor heard Decter singing these songs and introduced him to Hanggi, who had just made his debut in the shows ‘Bare: A Pop Opera’ and ‘Rock of Ages’. She immediately picked up the material and developed it further together with Decter.

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

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

The inciting onstage incident – ​​a school bully makes fun of the young girl’s plight, and her brother vengefully punches him in the face – is inspired by a true anecdote. “A friend of mine was at our house and made an insensitive joke about epilepsy and pretended to be having a seizure,” Leo explained. “I was really offended by it, so I kicked him out.” (No fists were waved in real life, though.)

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

“This (show) really grew into an advocacy for this destigmatization of what epilepsy is,” said Addie, who inspired the show. “I hope that anyone who sees this, whether they are still having seizures, is seizure-free or knows someone who is having seizures, feels seen and knows they are not alone.”

“Tyler Price!” also shows how a child’s diagnosis can affect everyone in a family: the parents argue over their daughter’s request for a bat mitzvah amid their struggle to pay her medical bills, and her brother yearns for the same parental attention that his sister always seems to get. Most movingly, it confirms that open communication and safe self-expression are an essential part of everyone’s treatment.

“It’s so powerful in the show when the father tells his son that he does indeed get scared,” Hanggi said. “We as parents think that we are not supposed to share our fears with our children, but actually it is more helpful to talk about difficult things and be intimate about your feelings as a family, rather than trying to cover things up or try to cover things up. to pretend they’re not there. That challenge is universal, whether or not you have firsthand 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 tells you when it’s ready to be on stage, because that’s when people start giving you money,” Hanggi said of the very warm reception of that reading. “People are starting to write checks and say, ‘What can we do to help?’ All this support erupted and we could feel the energy of: it’s time.”

News of the show reached UCB, a Belgium-based pharmaceutical company that produces several medications for the treatment of epilepsy. UCB recently contributed funding to this effort ‘Under the Lights’ Miles Levin’s award-winning short film that has since been developed into a feature film starring Lake Bell, Randall Park and Nick Offerman.

“We are always looking for new ways to help engage and support the community of people living with and caring for people with a debilitating and complex form of epilepsy, and there is often no greater medium than storytelling,” says Brad Chapman , head of UCB’s U.S. epilepsy and rare syndromes division, provided most of the capital for the debut “Tyler Price!” production.

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

‘Everything is still fine’

The entire series of “It’s All Your Fault, Tyler Price!” is visually designed to be ‘attack-proof’, because intense light sequences and patterns can sometimes cause reactions. The production has already welcomed visitors of all ages for their first-ever live show experience. (A completely relaxed performance is scheduled for the December 14 matinee.)

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

“Seeing a child play a younger version of you is an absolute trip, but I love helping my father with this project in this meaningful way,” says Leo. By singing his father’s songs five times a week, I now have so much more empathy for my parents, because I felt how difficult it must have been for them.

Meanwhile, Jackie Sloan transitioned from corporate reorganization and bankruptcy law to incorporation and management the Children’s Ranchan Atwater Village organization that offers therapeutic animal care programs for youth of all abilities and circumstances. She was inspired to do this when she saw how well their daughter Addie, who was diagnosed with Lennox-Gastaut Syndrome at the age of four, responded to caring for animals as a child.

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

Sloan described the Children’s Ranch less as a place where anyone tries to change, but more as a place where children and teens can get to know themselves better and express who they are with more confidence. So in a way, the ranch is actually a lot like the musical itself.

“The show doesn’t say everything will end perfectly,” she said. “It basically means: even when things are hard, everything is still okay and we’re going to build a great life together.”