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NEW YORK DAWN™ > Blog > Entertainment > She obtained seizures at 10 months outdated. So her dad wrote a musical about epilepsy and empathy
She obtained seizures at 10 months outdated. So her dad wrote a musical about epilepsy and empathy
Entertainment

She obtained seizures at 10 months outdated. So her dad wrote a musical about epilepsy and empathy

Last updated: November 16, 2024 11:46 am
Editorial Board Published November 16, 2024
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In March 1998, Ben Decter drove from Los Angeles to Tijuana to get drugs for his 17-month-old daughter, Addie. She had “catastrophic childhood epilepsy,” the neurologist had advised him, and a drug not but accessible within the U.S. was their finest guess to deal with her nonstop seizures.

That terrifying second is presently revisited 5 occasions per week as a part of a brand new musical — one which’s deeply private and greater than 20 years within the making. Titled “It’s All Your Fault, Tyler Price!,” the family-friendly efficiency is entertaining, empathetic and academic about epilepsy, a situation that is still stigmatized regardless of its ubiquity. And its world-premiere manufacturing, operating by way of Dec. 15 on the Hudson Backstage Theatre in Hollywood, is essentially funded by a pharmaceutical firm.

It’s an unconventional financing mannequin for a chunk of musical theater. However for a novel stage present with a singular origin story, it would simply be the correct prescription.

“The entertainment world has been changing, and that includes all of the ways that musicals, TV and movies typically get funding,” stated the present’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.”

Religion Graham, heart, and the solid of “It’s All Your Fault, Tyler Price!”

(Jim Cox)

‘I couldn’t discuss it’

At first, Decter — an Emmy-winning composer who’s scored TV reveals reminiscent of “Lucifer,” “Lethal Weapon” and “CSI: Cyber” — wouldn’t talk about his daughter’s seizures. Not even together with his faculty sweetheart spouse, Jackie Sloan, or his youthful youngster, 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,” stated Decter. “I couldn’t talk about it, but I found myself starting to write songs on the piano, and that felt really good.”

Decter performed 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.”

In 2007, a neighbor overheard Decter singing these songs and launched him to Hanggi, who had simply debuted the stage reveals “Bare: A Pop Opera” and “Rock of Ages.” She instantly took to the fabric, 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,” stated 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.”

Two people standing against a wall

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

(Robert Gauthier/Los Angeles Instances)

Mission achieved. “It’s All Your Fault, Tyler Price!” introduces 4 characters who’re thinly veiled variations of the Decters: an emotionally avoidant composer dad, a burned out company lawyer mother, a candy older sister with epilepsy, and a charismatic youthful brother tasked with taking good care of her.

The inciting incident onstage — a college bully makes enjoyable of the younger lady’s situation, and her brother vengefully punches him within the face — is impressed by an precise anecdote. “A friend of mine was at our house and made an insensitive joke about epilepsy, and pretended to have a seizure,” Leo defined. “I was really offended by it, so I kicked him out.” (No fists have been swung in actual life, although.)

The present musicalizes some seizure statistics, like the truth that 1 in 26 folks will get epilepsy of their lifetime, and that seizures can range in look, with manifestations as muted as a sudden head drop. One musical quantity even outlines seizure first assist suggestions, and leads the viewers in repeating again the security steps by way of a call-and-response gospel track.

“This [show] really bloomed into advocating for this destigmatization of what epilepsy is,” stated Addie, who impressed the present. “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.”

Four people standing together onstage

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

(Jim Cox)

“Tyler Price!” additionally portrays how a baby’s prognosis can have an effect on everybody in a household unit: the dad and mom argue about their daughter’s request for a bat mitzvah amid their struggles to pay her medical payments, and her brother craves the identical parental consideration his sister at all times appears to obtain. Most movingly, it affirms that open communication and secure self-expression are a significant a part of everybody’s remedy.

“It’s so powerful in the show when the dad just tells his son that, yes, he does get afraid,” stated 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 Firm and Lythgoe Household Productions, Decter and Hanggi self-produced a studying of “Tyler Price!” final yr on 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,” stated Hanggi of that studying’s very heat 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.”

Two people sitting with animals

Addie Decter and her brother, Leo, on the Kids’s Ranch. The 2 siblings impressed the musical “It’s All Your Fault, Tyler Price!”

(Robert Gauthier/Los Angeles Instances)

“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,” stated Brad Chapman, head of U.S. epilepsy and uncommon syndromes at UCB, which supplied the vast majority of the capital for the debut “Tyler Price!” manufacturing.

“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.”

A father and son onstage

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

(Jim Cox)

‘Everything is still all right’

Your complete run of “It’s All Your Fault, Tyler Price!” is visually designed to be “seizure safe,” since intense mild sequences and patterns can generally set off reactions. Already, the manufacturing has welcomed attendees of all ages for his or her first-ever stay present expertise. (A totally relaxed efficiency is scheduled for the Dec. 14 matinee.)

Ben Decter watched this week’s preview performances from numerous seats all through the theater and chatted with households afterward; he’s admittedly “a lot better” at expressing himself and speaking his emotions to others. His son Leo, now 25, performs guitar within the present’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,” stated Leo. Performing his dad’s songs 5 occasions per week, “I now have so much more empathy for my parents because I felt how hard it must have been for them.”

In the meantime, Jackie Sloan pivoted from company reorganization and chapter regulation to founding and operating the Kids’s Ranch, an Atwater Village group that gives therapeutic animal caretaking packages for youth of all talents and circumstances. She was impressed to take action upon seeing how properly their daughter, Addie, who was recognized at 4 with Lennox–Gastaut syndrome, responded to caring for animals as a baby.

Now 28 years outdated, Addie is an teacher on the ranch, serving to to steer classes for roughly 100 households a month on caring for rabbits, chickens, horses and guinea pigs. “She is a force, and I learn from her every day,” stated 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 stated. “It’s really saying, even if things are hard, everything is still alright, and we’re going to make a great life together.”

A group of people sitting together on a farm

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

(Robert Gauthier/Los Angeles Instances)

‘It’s All Your Fault, Tyler Value!’

The place: Hudson Backstage Theatre, 6539 Santa Monica Blvd., Hollywood

When: 7:30 p.m. Thursday and Friday, 2:30 and seven:30 p.m. Saturday, 2:30 p.m. Sunday; ends Dec. 15.

Tickets: $25 and up

Information: tylerpricemusical.com

Working time: 2 hours, 5 minutes (one intermission)

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TAGGED:dadEmpathyepilepsymonthsmusicalseizureswrote
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