Arlington Heights moms raise money, awareness for rare kids' disease

When Jenn Licato's daughter and Kristin Meek's son were diagnosed with neurofibromatosis, the Arlington Heights mothers had the same reaction: What is that?

Neurofibromatosis is a rare genetic disease that causes tumors to grow everywhere and anywhere on the body — including in places like the spine, eyes or ears. They can lead to pain, disability and, if they are on the exterior of the skin, disfigurement.

There is no cure for the disease, which also can bring about learning disabilities, blindness, deafness, amputations and other problems.

NF was in the news a few months ago when Pope Francis prayed with and hugged a man whose skin was completely covered in tumors because of the disease.

With one out of every 3,000 children being affected, neurofibromatosis is actually more common than cystic fibrosis, but less well known — something Licato and Meek are trying to change.

When Meek's son Ben, now almost 5, was about 6 months old, she started noticing numerous discolored marks on his skin. The so-called café-au-lait spots are a first sign of the disease, but it took a trip to a dermatologist and then a specialist at Lurie Children's Hospital in Chicago before the diagnosis was made.

“My initial reaction was, ‘What is this word?' I was shocked and sobbing,” Meek said.

A few years later, friends at her church introduced her to Licato, another Arlington Heights mother who was going through the same diagnosis process with her daughter Audrey, now 22 months.

Licato said she thinks she was in denial when she first heard the diagnosis.

“There are days when I wake up and think, ‘She will be OK,'” Licato said. “But there's no set path. It's not clear cut, there are so many things that could go wrong.”

The two mothers became fast friends, sharing concerns about their children's illness, looking up research together and participating in charity walks.

The two have raised more than $30,000 for neurofibromatosis research organizations in the past year, some from a fundraiser and silent auction they hosted together last month at Metropolis Performing Arts Centre in Arlington Heights.

“(Ben and Audrey) have a long way ahead of them, so if we can start some clinical trials now, maybe there can be new discoveries by the time they are older,” Meek said.

Aside from raising money together, the moms have been a shoulder for one another to lean on.

“No one else understands what we are going through, so having someone local who gets it is an amazing help,” Meek said.

“We are a special kind of friends,” Licato said. “It's so nice to know there's somebody else looking at research and keeping an eye out.”

For now, Ben and Audrey are both relatively healthy, though both are small for their age, have several discoloration marks and are starting to grow a few visible tumors. The disease will continue to progress as they grow.

“The hardest part is you just don't know,” Licato said. “We'll never be able to rest easy. Ben and Audrey could grow up to live totally normal lives, or they could not. This is going to be with us for the rest of our lives.”

Even if the children grow up with relatively few health concerns, NF could leave them physically disfigured, something their parents worry about as well.

“You want your kids to grow up to be happy, but that can be affected too,” Licato said. “We worry about how they'll feel about themselves.”

Neurofibromatosis is still somewhat unknown. Compared with childhood diabetes or leukemia, there is relatively little literature for how to talk to your child and other siblings about NF.

Meek tells her family, “Everyone has something. Some things you can see, some you can't. That's why you have to be understanding of all people.”

Licato believes, “God gave us Audrey for a reason, so we can make a difference.”

The duo will participate in the Great Steps For NF Walk sponsored by NF Midwest in Naperville on June 21 and the Children's Tumor Foundation NF Walk in Chicago on June 28.

Licato said the walks and fundraisers have given her back a sense of control that she lost after the diagnosis.

“You have no control of what's going to happen. There's no medicine you can give them to make them better,” Licato said. “You don't appreciate healthy kids until you don't have one.”