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 revisited five times a week as part of a new musical — one that’s deeply personal and nearly 20 years in the making. “It’s All Your Fault, Tyler Price” is an entertaining, empathetic and educational family-friendly performance 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 Los Angeles, 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.”
At first, Decter — an Emmy-winning composer who’s scored such TV shows 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,” Decter said. “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 OK 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.”
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,” Hanggi said. “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.”
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.”
“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,” Hanggi said.
“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.”
Decter watched recent 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. 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,” Leo said. 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.”
Meanwhile, 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 youths of all abilities and circumstances. She was inspired to do so upon seeing how well Addie, who was diagnosed at age 4 with Lennox-Gastaut syndrome, responded to caring for animals as a child.
Now 28, Addie is an instructor at the ranch, helping to lead lessons for 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 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 teenagers 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.”