When you look at 7-year-old Emma Leibow, you see a little girl with dark blonde hair, a big smile, rosy cheeks, and, on most days, a pair of butterfly wings strapped to her back. You might see her dancing, a passion of hers, or running, an activity she does with her father, former "Jersey Boys" star Jeff Leibow.
What you won't see is the complex of tumors in her left leg and the tumor in her brain.
Emma has neurofibromatosis (NF), a genetic disorder of the nervous system characterized by tumors that grow on nerves. Never heard of it? You're not alone — Jeff and his wife Melody were also unaware of the disease when Emma was diagnosed in 2010 at just 9 months old.
It all started when Jeff and Melody noticed that their baby daughter's "birthmarks" were multiplying; they later found out that the marks, known as "café au lait spots," were one of the most common signs of NF.
A pediatrician recommended the Leibows visit a neurologist, which led to an MRI that revealed "hot spots," or scarring, in Emma's brain. When doctors told Jeff and Melody that their baby girl had NF, they were devastated — and confused.
"We had no idea what it was," says Jeff. "The first thing we did was look it up. We did the one thing I now tell every family not to do — we Googled it."
Panic ensued — a Google search of NF revealed images of people completely covered in visible tumors and post after post about deformities and missing limbs.
"That sent us in a downward spiral," Jeff says.
A Scary Diagnosis
In terms of all medical conditions, NF is rare; however, in terms of genetic disorders, NF is actually relatively common. Emma is one of more than 100,000 people in the United States living with the condition, which has over 100 mutations. The disorder affects 1 in 3,000 people worldwide, making it more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington's, and Tay-Sachs combined.
The fear of the unknown is the worst kind of fear.
The symptoms of NF — which include massive tumors, chronic pain, spotted skin, hearing loss, and developmental disorders — can be devastating. There's no known treatment or cure, so those affected by it can only manage their symptoms and hope that the next doctor's appointment won't reveal something shocking.
"The fear of the unknown is the worst kind of fear," Melody says. "To find out that there is no cure left me feeling even more frightened for my child."
A Family Fights Back
After frantically searching the internet for more than six hours, Jeff and Melody finally switched their focus from finding information to finding help.
"That's how I was connected with Neurofibromatosis Network, and I was lucky enough that the executive director (Kim Bischoff) spent two hours on the phone with me," Jeff says. " It gave me this idea that maybe I could do something."
At the time of Emma's diagnosis, Jeff was starring in theatrical hit "Jersey Boys" in Las Vegas; he soon left the show to focus on Emma's care. He also founded NF Hope, a benefit concert to raise money for the Neurofibromatosis Network. Jeff rallied the theater community to create the set list for the inaugural concert in 2011, just a year after Emma's diagnosis. Now, 6 years later, NF Hope has raised over $400,000, and Jeff has to turn performers away because there is too much interest.
Despite the star-studded lineups, which have included Grammy-winning R&B group All-4-One and cast members of Rock of Ages, Emma is the true celebrity at the concerts. Ever since she hopped on stage to join singer-songwriter Clint Holmes during his performance when she was 4, she has run the show, including getting to choose the song that her parents will perform every year and performing a song or dance herself.
Never Giving Up
Emma's case of NF is somewhat mild; she does not suffer from any learning disabilities or major physical symptoms — except for the benign tumors. Though blind to the naked eye, her tumors range from small bumps that you can feel under the skin to large masses hidden between nerves.
In the years since her diagnosis, Emma has developed more than 30 tumors — many of them so engrained in her body's fibers that they are inoperable. It's impossible to know how many more tumors Emma will develop over the course of her lifetime, and because there's no treatment to stop or slow the growth of these tumors, the Leibow family can only wait and hope that more won't be diagnosed each year.
Luckily, Emma's tumors have all been noncancerous. But in January 2016, doctors found a large brain tumor — the first one that could potentially become malignant and require extensive rounds of chemotherapy to treat.
"That was the first time NF really reared its ugly side for Emma," Jeff says. "This is the kind of tumor that we hoped she would never have."
The brain tumor has grown to 14 times its original size since doctors found it. While it cannot be removed due to its placement in the brain, a recent doctor's visit showed it isn't growing quite as fast anymore — a small but not insignificant relief.
An MRI also revealed a complex of tumors in her left leg. Because Emma is so young, the tumors have latched onto her femur and accelerated its growth, causing her left leg to be 2 inches longer than her right. She will need surgery to stop the growth of her left leg so that her right leg can catch up.
Though she'll be in crutches for three weeks following the surgery, Emma's taking the procedure in stride.
"I might run a 5K when school gets out," Emma says. "I like running because I get to do it with my dad."
Clearly nothing, not even an incurable condition and uncertain future, will keep this headstrong, inspiring girl — a "little hero" to her family — off her feet for too long.
The 7th annual NF Hope concert will be held on May 8, 2017. For more information, visit nfhope.org.