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EMMA-WINNING PRODUCTION:  Ex-Jersey Boy’s concert aids Nevada neurofibromatosis sufferers, including his brave young daughter 

“Let that lonely feeling wash away  /  Maybe there’s a reason to believe you’ll be OK / ’Cause when you don’t feel strong enough to stand / You can reach, reach out your hand.”

— “You Will Be Found” from the musical Dear Evan Hansen, Emma Leibow’s chosen NF Hope Concert anthem, to be performed by her parents

 

Whatever your age or stage of life, you can always ask yourself: What do you want to be when you grow up? Or grow older?

Try this aspiration: Be like a 9-year-old girl — specifically, this 9-year-old girl.

“I just powered through it,” says Emma Leibow, who, at her tender age, has indeed powered through 16 MRIs revealing around 30 tumors in her little body, triggered by her genetic disorder, neurofibromatosis, which causes tumors to grow randomly and frequently.

Seated beside Emma at a Henderson Coffee Bean and Tea Leaf, where she is up, down, in and out of her chair — as any rambunctious 9-year-old would be — her dad, former Jersey Boys co-star Jeff Leibow, gazes admiringly at his daughter.

“One thing I’ve learned is how generous the performing community in this town is. I’ve always been floored by it.” — Jeff Leibow

“Watching her say something like that,” he says, “will get me all the way through Oct. 21.” That’s the date for his eighth annual NF Hope Concert to battle neurofibromatosis. Hosted by Chet Buchanan of KLUC 98.5-FM, at the Palazzo Theatre, it’s a passion project for Leibow and his wife, Melody, who are producers, directors and overall maestros for the Vegas guest headliners.

“We started out with maybe a hundred people in the audience,” says Melody, a onetime professional singer, about the inaugural 2011 production in the showroom at the former Las Vegas Hilton (now Westgate Las Vegas). “Now we’re up to about 600 people. Our first year we might have raised about $6,800 and last year we were over $100,000. Every year it surprises us how many people here wrap their arms around us and come out and donate.” (Ultimate goal: topping $1 million by 2020.)

Donations go to battling neurofibromatosis, a prevalent but little-known disease — dubbed NF for short — that affects one in every 2,500 births in the United States, totaling around 128,000 cases currently. That makes it more common than hereditary muscular dystrophy, cystic fibrosis, Huntington’s disease and Tay-Sachs combined.

Among the performers scheduled to join the fight this year: Clint Holmes, Mo5aic, Human Nature, the Bronx Wanderers, Earl Turner, Finding Faith, Grammy winners All-4-One, Nicole Pryor and the Las Vegas Academy Choir. 

“One thing I’ve learned is how generous the performing community in this town is,” says Jeff, who portrayed Nick Massi of The Four Seasons in the Vegas version of Jersey Boys for around 2,800 performances, from the musical’s 2008 debut until he departed in 2014. “I’ve always been floored by it.”

Also on the concert bill: Emma’s mom and dad, who have become “the point of contact” for Nevada neurofibromatosis families via their visibility at concerts and dedication to the cause. (As development director of the national Neurofibromatosis Network, Jeff is also overseeing concerts in Chicago and New York.)

 “We just want to be there for the community and help them the way they’ve helped us,” Melody says about the bond that’s developed between them and Nevada NF families.  They don’t do it alone, though.  “We partner with the Nevada Childhood Cancer Foundation because under their umbrella is NF,” Jeff adds. “We want to help them do as much as they can.”

Jeff, Emma and Melody Leibow

Jeff, Emma and Melody Leibow stroll their Henderson neighborhood on Friday, Oct. 12, 2018,. (Sam Morris/Las Vegas News Bureau)

Spunky Emma Leibow — who hasn’t yet decided if she wants to grow up to be a culinary chef, a circus performer or any of “too many things, I’ve lost track”— has become the face of this local fund-raiser to deal with a disease that erects multiple medical roadblocks: Severity of the disorder increases over time. There is no direct treatment. There is no cure. Emma was diagnosed at 9 months old, essentially making this a lifelong struggle. Not that you’d notice.

“Emma, you want to show off?” her dad asks, and his daughter rolls up her sleeve to reveal a small telltale sign of the disease – a light brown, birthmark-like splotch called a “café au lait spot.” Learning and attention deficit disorders are also symptoms, as well as darker consequences including deafness, cancer and even death.

Disfigurement is also possible, with some rare patients, as Jeff notes, “covered from head to toe in tumors” or even rendered immobile. Emma’s many tumors have mostly been internal — but still particularly onerous on a pre-pubescent girl. “Earlier this year we discovered a new tumor in her optic nerve, and we discovered one on her cerebellum,” Jeff says. “It’s one out of every three (doctor) visits we discover something new” when they go to Children’s Hospital Los Angeles. No Nevada facility is solely dedicated to neurofibromatosis.

“The tumor they found on her brain we just had to monitor. Sometimes it’s just a waiting game,” Melody explains. “She had surgery on her leg because we noticed her hips were completely off. We had an MRI and discovered tumors on her left leg. But they don’t remove the tumors. Thy are too integrated into the body, wrapped around the nerves and the muscles.”

Coping with the medical challenge — and its steep expenses — sidetracked Jeff from his performing career, as he now works in audiovisual sales for Encore Events Technologies. Though he would love to return to the stage, he notes that “this industry has its ups and downs. When you’re alone or it’s just a couple and there’s nothing to face other than normal life, you can take that ride. But when you have a child with a special need, you don’t have that luxury.”

Fear not — there’s still a ham in the fam. “I saw my friend Mr. Clint,” Emma says about a previous show, referring to the singer otherwise known as Mr. Holmes, who, midway through “This Nearly Was Mine” from South Pacific, found himself with a partner. “I decided to go up on stage and dance with him.”

Tumors be damned — the kid’s indefatigable. “If anything blocks your way, just know that it can’t block your dreams,” she says about advice she gives fellow NF battlers.

As for that Dear Evan Hansen song she requests her parents perform? Listen to the lyrics and you’ll divine the essence of Emma:   

“Even when the dark comes crashing through / When you need a friend to carry you / And when you’re broken on the ground / You will be found / So let the sun come streaming in / ’Cause you’ll reach up and you’ll rise again.”

 

 The eighth annual NF Hope Concert will be Oct. 21 at 1 p.m. at the Palazzo, 3325 Las Vegas Blvd. S. Tickets start at $49 and can be purchased at any box office at the Palazzo or the Venetian, by visiting Palazzo.com, or calling 702-414-9000, or 866-641-7469. VIP tickets are available by contacting info@nfhope.org.

   

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