Almost five years ago, Melanie Leach’s life changed forever when her third son, Zach, was diagnosed with neurofibromatosis.

Like many parents, Melanie and her husband had never heard of NF prior to Zach’s diagnosis.

“Zach has definitely changed our family dynamic and taught us all something about tolerance, acceptance, and patience,” Melanie said. “Looking at Zach, people can tell he is unique – he is 4 years old and over four feet tall and weighs almost 60 pounds! He also has [café au lait] spots; lots of spots! Talking to him, people begin to wonder a bit more what is wrong with him because he has a severe language delay.”

Despite his medical challenges, Melanie describes Zach as “the happiest 4-year-old you’ll ever meet” with a smile that “can light up a room.”

Melanie is determined to make life better for Zach and the thousands of others diagnosed with NF each year.

“I cannot change the fact that my son Zachery has NF, but I can share his story and educate others and bring awareness to this genetic neurological disease,” she said.

One way Melanie spreads NF awareness is by organizing the Orlando, Florida, walk for the past four years.

“Each year I feel I learn something new — about NF or something that makes the walk better,” she said. “We have representation from the Orlando NF clinic, so participants are able to get educational materials in addition to the items NF Network offers. We are even lucky enough to have doctors and nurses in attendance to give information on setting up appointments.”

The walks also give Melanie a chance to interact with others from the NF community.

“People from all across the state of Florida attend,” Melanie said. “Every year attendance has grown. I really like that I’m always meeting new people, either at the walk or leading up to it. It’s pleasing to have families and friends come out to show their support, to know they are not alone in the fight.”

 

The connections Melanie makes through the walk and the stories she hears also help her raise NF awareness in Congress each year.

“When I first learned about the advocacy program, I did not think it was something I’d be able to accomplish; traveling to D.C., educating myself on the Congressionally Directed Medical Research Programs, walking all day, meeting congressional staff and sharing the story of how NF affects my son, then spending the next few months following up, pleading for support and signatures,” Melanie said. “To date I have completed three D.C. trips and feel empowered each time for all the reasons I was initially worried.”

Because of her efforts, Florida’s representatives now support the appropriations bill that provides funding for NF research.

Melanie also raises funds for NF each year through a bake sale at her work.

“Each year I am able to host a bake sale at my work,” she said. “As if seeing people come together for the walk wasn’t gratifying enough, at each bake sale I’m really left in admiration. I have dozens of coworkers selflessly making and donating items for hundreds of other coworkers to purchase — all knowing that every dollar goes to the NF Network and its causes.”

Through a matching program, funds raised through the bake sale go even further.

“My employer has a community partnership program that matches the donations 50 percent,” Melanie said. “This event is not a huge moneymaker, but does typically bring in just under $1,000 and gets people talking about NF.”

This year’s Orlando, Florida, walk will be held Saturday, November 11 at Jay Blanchard Park. Click here to learn more.