Addie Decter, Ben Decter, Jackie Sloan and Leo Decter on the Kids’s Ranch in Atwater Village, Calif. Ben Decter is the composer of the musical “It is All Your Fault, Tyler Value!,” which is impressed by his household’s expertise with epilepsy. (Robert Gauthier/Los Angeles Occasions/TNS)
LOS ANGELES — 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 advised him, and a drug not but obtainable 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 practically 20 years within the making. Titled “It’s All Your Fault, Tyler Value!,” 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 means 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 singular stage present with a singular origin story, it’d simply be the precise prescription.
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“The leisure world has been altering, and that features the entire ways in which musicals, TV and flicks usually get funding,” mentioned the present’s director, Kristin Hanggi. “It’s actually simply the thought of partnering with people who find themselves in alignment with the identical mission as you’re and wish to serve the identical neighborhood you do. And once you’re united on that degree, it feels simple.”
‘I couldn’t speak about it’
At first, Decter — an Emmy-winning composer who’s scored TV exhibits corresponding to “Lucifer,” “Deadly 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 little one, Leo Decter.
“I had plenty of anger, unhappiness and isolation, however I’d simply internalize and go to the gymnasium or exit operating,” mentioned Decter. “I couldn’t speak about it, however I discovered myself beginning to write songs on the piano, and that felt actually good.”
Decter performed his compositions for Sloan, who’d then sing them with him. “It was his window to precise how he felt, like he might say issues in songs that he wouldn’t be okay saying out loud,” she recalled.
“Although it was painful, I felt inspired and eager for us that he was discovering a approach to keep current and work out how he was feeling. (These diagnoses) are so onerous on households, and most {couples} don’t make it by means of.”
In 2007, a neighbor overheard Decter singing these songs and launched him to Hanggi, who had simply debuted the stage exhibits “Naked: A Pop Opera” and “Rock of Ages.” She instantly took to the fabric, and continued to develop it with Decter.
“One of many issues that struck me concerning the lyrics was that a few of them have been from the youngsters’s standpoint and expressing feelings I hadn’t heard earlier than,” mentioned Hanggi. “The subject was so heavy, however there was additionally a lot humor and laughter and lightness. I used to be like, there’s one thing right here, we simply have to determine the right way to dramatize this.”
Mission achieved. “It’s All Your Fault, Tyler Value!” 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 faculty 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 buddy of mine was at our home and made an insensitive joke about epilepsy, and pretended to have a seizure,” Leo defined. “I used to be actually 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 individuals will get epilepsy of their lifetime, and that seizures can differ in look, with manifestations as muted as a sudden head drop. One musical quantity even outlines seizure first support suggestions, and leads the viewers in repeating again the protection steps through a call-and-response gospel tune.
“This (present) actually bloomed into advocating for this destigmatization of what epilepsy is,” mentioned Addie, who impressed the present. “I hope that anybody who sees this, whether or not they do nonetheless have seizures, are seizure-free or know someone who has seizures, feels seen and is aware of that they’re not alone.”
“Tyler Value!” additionally portrays how a toddler’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 all the time appears to obtain. Most movingly, it affirms that open communication and secure self-expression are an important a part of everybody’s remedy.
“It’s so highly effective within the present when the dad simply tells his son that, sure, he does get afraid,” mentioned Hanggi. “We as dad and mom assume we’re not imagined to share our fears with our children, however really, it’s extra useful to speak about onerous issues and be intimate about your emotions as a household, as a substitute of protecting issues up or attempting to fake they’re not there. That problem is common, whether or not or not you could have firsthand expertise 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 Value!” final 12 months on the Garry Marshall Theatre in Burbank.
“A chunk will let you know when it’s able to be on stage as a result of that’s when individuals begin providing you with cash,” mentioned Hanggi of that studying’s very heat reception. “Folks begin writing checks and saying, ‘What can we do to assist?’ All this assist erupted, and we might really feel that vitality of, it’s time.”
Information of the stage present reached UCB, a Belgium-based pharmaceutical firm that produces numerous medicines that deal with epilepsy. UCB had just lately contributed funding to “Below the Lights,” Miles Levin’s award-winning quick movie that’s since been developed right into a function with Lake Bell, Randall Park and Nick Offerman.
“We’re all the time on the lookout for new methods to assist handle and assist the neighborhood of these residing with and caring for people with a debilitating and sophisticated type of epilepsy, and there’s typically no larger medium than storytelling,” mentioned Brad Chapman, head of U.S. epilepsy and uncommon syndromes at UCB, which offered the vast majority of the capital for the debut “Tyler Value!” manufacturing.
“For us, it’s a pure alternative to succeed in extra individuals probably than ever earlier than, in what may be described by means of these platforms as one of many best consciousness campaigns for epilepsy.”
‘The whole lot continues to be all proper’
The whole run of “It’s All Your Fault, Tyler Value!” is visually designed to be “seizure secure,” since intense mild sequences and patterns can typically set off reactions. Already, the manufacturing has welcomed attendees of all ages for his or her first-ever stay present expertise. (A completely relaxed efficiency is scheduled for the Dec. 14 matinee.)
Ben Decter watched a latest preview performances from numerous seats all through the theater and chatted with households afterward; he’s admittedly “loads higher” at expressing himself and speaking his emotions to others. His son Leo, now 25, performs guitar within the present’s band.
“Watching a child play a youthful model of you is an absolute journey, however I really like getting to assist my dad on this significant means on this undertaking,” mentioned Leo. Performing his dad’s songs 5 occasions per week, “I now have a lot extra empathy for my dad and mom as a result of I felt how onerous it should have been for them.”
In the meantime, Jackie Sloan pivoted from company reorganization and chapter legislation 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 identified at 4 with Lennox–Gastaut syndrome, responded to caring for animals as a toddler.
Now 28 years outdated, Addie is an teacher on the ranch, serving to to guide classes for roughly 100 households a month on caring for rabbits, chickens, horses and guinea pigs. “She is a pressure, and I be taught from her day-after-day,” mentioned Jackie of working alongside her daughter, who hasn’t had a seizure in years. “Addie has this manner of seeing issues by means of the eyes of the scholar and serving to us perceive how we will higher assist them.”
Sloan described the Kids’s Ranch not as a spot attempting to vary anybody, however extra so the place youngsters and youths can get to know themselves higher and present up extra confidently as who they’re. So in a means, the ranch is definitely loads just like the musical itself.
“The present isn’t saying that every thing is gonna prove completely,” she mentioned. “It’s actually saying, even when issues are onerous, every thing continues to be alright, and we’re going to make an ideal life collectively.”
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