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On Ellie's team

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Photo by Sydney Cromwell.

From playing in the backyard with siblings to learning to swim all by herself, 4-year-old Ellie Waldrop is unstoppable.

It’s what her parents, Vestavia residents Stephanie and Wes Waldrop, love about Ellie, and what they hope her neurofibromatosis (NF) won’t take away from her.

Neurofibromatosis is a genetic disorder that causes abnormal growths in the nervous system. It affects about 1 in 3,000 people, and can be inherited or caused by a gene mutation, as in Ellie’s case. In its mild form, NF can be almost unnoticeable; in more severe cases, it can cause tumors, hearing and vision loss, learning disabilities, pain and cardiovascular issues.

Ellie was diagnosed at 15 months old after her mother and doctor noticed spots like brown birthmarks on her body, a classic sign of NF. Since then, she’s begun wearing glasses but has not developed any of the other symptoms. They just have to wait and see if other problems will develop as she grows older, particularly through puberty.

“Ellie’s life hasn’t been affected. She doesn’t know any different. She runs around with her siblings and thinks she’s as big as they are,” Wes said.

They live with the “fear of the unknown” and the knowledge that Ellie’s condition could suddenly change.

“Six months from now, anything could pop up,” Stephanie said. “With NF there’s no determination if it’s going to be mild, if it’s going to be severe. I think that in itself — there’s no determining factor, so we just sit and we wait for something to happen. So I think that in itself is enough to drive you crazy.”

However, they also feel extremely lucky that Ellie is healthy so far. When she was diagnosed, the Waldrops had never heard of NF, and Stephanie remembers practicing the pronunciation. Since then, they’ve met multiple families dealing with the same illness, including a high school classmate of Stephanie’s and a neighbor of Wes’s brother.

“It’s right here in our Vestavia community. It’s like, ‘Oh, what? There’s more of you?’” Stephanie said.

Through these families, the Waldrops have seen the potentially tough road that could lie ahead of them. They also found a community that cares about the same cause and can provide advice along the way.

Friends and family who were once clueless about NF have also stepped up to the plate. Ellie’s older sister, 11-year-old Mary Britton, made a video about NF for a class project. Neighbors held an ice cream social last year and another friend held a crawfish boil to raise money for NF research. Stephanie said it’s her daughter’s personality that makes people so eager to be “on Ellie’s team.”

“You can’t go in a room and not notice her. She just lights up a room,” Stephanie said.

“And she talks to anybody. She’ll befriend anybody,” Wes added.

The Waldrops helped Renie Moss, another Vestavia parent of a child with NF, start an Alabama chapter of the Children’s Tumor Foundation to raise funds for research and awareness. Last year they organized their very first fundraising walk in Railroad Park. They expected around 100 people, but instead had 400 participants and raised over $50,000.

“For our first walk, that’s incredible,” Stephanie said.

This year, they hope to have more attendees. The NF Walk will be Oct. 18 in Hoover’s Veterans Park, with all proceeds going to fund clinical trials for NF treatments. Though Ellie has not needed trial treatments so far, Stephanie and Wes want to provide options for other parents dealing with more severe cases.

“It’s always good to know you’ve done something to help fund that research for somebody else,” Stephanie said.

With Ellie’s medical future unknown, the Waldrops are focused on raising awareness of NF and enjoying their little daughter’s big personality.

“She’s just full of life, and that’s what we love. It’s so fun to watch her,” Stephanie said.

To learn more about the Alabama NF Walk, visit nfwalk.org/al.

Alabama NF Walk

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