Father’s foundation raises awareness of daughter’s disorder

By day, Jeff Leibow helps chase his 21-month-old daughter Emma . By night, he throws his energy into portraying Nick Massi in “Jersey Boys” at the Palazzo.

For Emma, every day and night — and each one here on out — means carrying the role of a little girl with a genetically inherited disorder that causes tumors to grow in her nervous system.

Neurofibromatosis, more commonly known as NF, is the long way to say the Leibow family has a possibly tough road ahead.

But at 1:30 p.m. June 12, a small army of voices will unite for Emma and others affected by the now-incurable disorder for the NF Hope Concert at the Hilton Theater, 3000 Paradise Road.

Performers from Strip shows such as “Jersey Boys,” “Lion King” and “Phantom — The Las Vegas Spectacular” and impressionists Rich Little and Gordie Brown, among others, are scheduled to perform at the benefit concert.

A silent auction, including tickets to other Strip attractions and shows, also is planned.

Funds raised from the event will benefit the Jeff and Melody Leibow’s foundation NF Hope and Neurofibromatosis Inc., a nonprofit research organization.

Ultimately, though, the Leibows say they just want to raise awareness about the disorder.

“The money we raise will only be a bonus,” Leibow said.

NF is a common diagnosis, and one in about 3,000 cases is treated for the first time each year, Leibow said.

At one time, the disorder was referred to as elephant man disease as doctors thought “Elephant Man” Joseph Merrick was affected by NF. It was a misdiagnosis.

Emma’s case of NF was likely a random mutation, her parents say, but her descendants could be affected by it. The couple grew concerned when they noticed pigmented birthmarks on Emma’s stomach when she was 3 months old.

She wasn’t diagnosed with NF until six months later. The future of her condition is uncertain, but Emma’s parents will be on the look out for optic gliomas, or small, noncancerous tumors. Emma also will have yearly MRIs and regular check ups with her Los Angeles-based neurologist.

The effects of NF are unpredictable and have varying manifestations and degrees of severity, according to Neurofibromatosis Inc.

“There really isn’t a way to be proactive,” Leibow said. “You just basically look for symptoms (of tumor flare-ups).”

Today, Emma is an active toddler with a growing list of likes — anything the color purple, the movie “Fantasia” — and personality traits.

“She makes me laugh every day,” Leibow said. “She awes me.”

Leibow said he and wife Melody have no plans to encourage her into the family business , but she may choose that path on her own. On a recent trip to The District at Green Valley Ranch, 2240 Village Walk Drive in Henderson, Emma gravitated to a small stage set up in the middle of the shopping center. Melody Leibow struggled to chase Emma off the platform.

“The sign says, ‘Stay off stage,’ ” she instructed her daughter.

Emma danced and did all her toddler tricks for her audience and whined when her dad lifted her off the stage.

“You’re not going to be a performer at all,” Jeff Leibow said in jest.

Emma is set to be in attendance at the concert, and it will be her first official stage appearance.

“We’re practicing her bow,” Melody Leibow said.

Jeff Leibow is slated to perform a doo-wop rendition of “Your Smile” with his fellow Jersey Boys. He had one request of them for the event.

“I asked the performers to perform something that inspires them,” Leibow said. “When this all comes together and all these talents are on one stage for one cause, it’ll be a relief to get on stage and do what I love.”

The Leibows hope to make the benefit an annual event.

Tickets are $39, and VIP accommodations are $85. To purchase tickets, visit tinyurl.com/3mg2wpz or call 732-5755 or 800-222-5361.

For the latest information on the event, follow @vegasnfbenefit on Twitter. For more information on NF, visit nfnetwork.org.

Contact Centennial and Paradise View reporter Maggie Lillis at mlillis@viewnews.com or 477-3839.

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