Dad goes from stage to Congress to advocate for tumor-stricken daughter

WASHINGTON — For seven years, Jeff Leibow sang a lead role in the Las Vegas production of “Jersey Boys.” These days, however, his audience is a party of one.

Each night, he sits at the foot of his five-year-old daughter’s bed and softly croons a favorite lullaby from an old Disney movie. “When you wish upon a star,” he serenades, “it makes no difference who you are — everything your heart desires will come to you.”

The words have extra meaning for the Leibow family, for whom wishes and hopes are as much a part of life as breathing.

Emma Leibow has neurofibromatosis (NF), a genetic disorder of the neurological system. Her father calls it an “ugly” disease and explains, “essentially, what my daughter has is a mutation on a gene that normally stops tumors from growing. …

“The result is, tumors can grow on any nerve in the body at any time with no warning, and there is no way to predict if they will grow, how aggressively that will grow, or even if they will regress.”

The diagnosis — which happened when Emma was nine months old — was terrifying. As time passed, Leibow could think of little else than what the future might hold in store for his child — a sweet little girl with an infectious smile.

As her tumors began to multiply, Leibow started to rethink his own life, and eventually made the decision to put his up-and-coming career in musical theater on hold to become a full-time advocate for Emma and the roughly 125,000 other Americans living with NF.  “As a dad, I am not somebody to sit around at all — especially when my daughter is concerned,” he says.

Jeff Leibow, first from the right, performs in "Jersey Boys," Las Vegas. (Courtesy of Jeff Leibow)
Jeff Leibow, first from the left, performs in “Jersey Boys,” Las Vegas. (Courtesy of Jeff Leibow)

His path recently brought him to Washington to lobby congress for more money for NF research — currently part of a special medical research program at the Pentagon originally funded with surplus defense money at the end of the Cold War.

Leibow says there is no cure in sight, but clinical trials are underway on the very first treatment for the disease: a drug that specifically targets the learning disorders experienced by many kids with neurofibromatosis. Progress is slow and the pace is frustrating, in large part because the big drug companies tend to ignore NF.  Leibow believes this is because there aren’t enough patients to get a big return on the investment they would have to make in research and development.

The most common form of NF, which Emma suffers from, affects one in 3,000 births.

Parents of NF kids are also frustrated because there is so little public awareness of the condition, and they fear many people may confuse it with  Proteus Syndrome or “Elephant Man Disease,” which produces disfiguring growths on various parts of the body.

All of Emma’s tumors are linked to her nervous system. Leibow says there are about 20 tumors in her body right now, including several in her brain.

“Fortunately, it does not affect her daily life.  It’s something that probably scares her mom and me more than her,” he admits.

But they are working through the fear and using their concern to make a difference. Four years ago, Leibow brought his theater pals from the Las Vegas Strip together for the first in a series of successful benefit concerts for NF.

Now, he is aiming to take those concerts national on behalf of the Neurofibromatosis Network. As for Emma, Leibow reports she is doing well in school, loves math, and at five years of age is already telling her parents that she wants to be a scientist.

They look at her with pride, and as they put her to bed each night, they sing her songs that tell of wishes, dreams and hopes.

Ask Leibow whether his hopes are real, and he pauses a moment, then smiles.

“I am very hopeful we will find something. It will happen. In my lifetime, I hope to see treatments. In Emma’s lifetime, I hope for a cure.”

 

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