Why Holly Griffin’s Story Reminds Us that with NF, Waiting Isn’t an Option

When Holly Griffin was 12 years old, she learned she had neurofibromatosis type 1 (NF1). At the time, it didn't feel like much. She went to the doctor once a year, and otherwise life felt normal. She looked like everyone else. She felt like everyone else. No one around her talked much about what NF could mean for her future, so she didn't think about it either.

For years, NF stayed in the background of her life.

It wasn't until high school that Holly began to notice changes. A plexiform tumor developed on her knee, and small neurofibromas started appearing across her body. As an active teenager who loved soccer and dance, the visibility of it was difficult. She remembers people staring, asking what had happened, and feeling suddenly aware of something she hadn't fully understood before.

Still, life moved forward.

As Holly got older, she made the decision-despite the risks-to have children. Pregnancy changed everything. The tumors that had once been manageable began to grow rapidly, becoming more visible and more physically challenging. Her first child, Addison, was born without NF. But when her son Hayes was born with NF1, the reality of the condition took on a new weight.

"I felt like I just caused this sweet little baby a lifetime of problems," she shared.

For a long time, Hayes' only visible symptom was a bowed leg. But that single symptom came with significant consequences. His leg broke four times over the course of his childhood-at ages four, six, nine, and ten. Each break meant recovery, uncertainty, and the looming question of what would come next.

Eventually, after exhausting every option, Hayes made a decision that reframed everything.

He chose to amputate his leg.

Holly describes it as the best decision they've ever made-not because it was easy, but because of what it gave him. With a prosthetic leg, Hayes has been able to do what he loves. He plays basketball and golf, and he approaches life with a level of resilience and optimism that Holly openly admires.

At the same time, their experiences highlight something that many people don't realize about NF: it doesn't follow a predictable path. Even within the same family, the condition can look completely different from one person to the next. It can remain relatively quiet for years, only to change quickly and without warning.

That unpredictability has shaped Holly's life in profound ways.

Over time, her own NF continued to progress. Tumors increased, surgeries became more frequent, and managing the physical and emotional toll became part of her everyday reality. In 2020 alone, she underwent procedures to remove over 100 neurofibromas and to debulk a tumor in her leg. In the years that followed, she continued to pursue specialized care-traveling across the country to find doctors with experience treating NF. In 2024, she underwent two procedures that together removed close to 1,000 tumors from across her body, followed by another surgery in 2025 removing hundreds more. These procedures not only addressed the physical burden of NF but also helped restore a sense of confidence in her body-something that had been deeply affected over time. Then, in 2024, she faced another challenge with a breast cancer diagnosis-layering a new level of complexity onto an already demanding journey.

Through it all, Holly has continued to move forward, often quite literally.

She didn't start running because it came easily. She started running during one of the hardest periods of her life, after a difficult divorce, when she needed an outlet for the anger, grief, and uncertainty she was carrying. What began as a way to cope quickly became something more. Short races turned into longer ones, and eventually, she set her sights on distances she once thought were out of reach.

Running also led her to the Children's Tumor Foundation's NF Endurance program, where she found a community that understood her in a way few others could. She became a dedicated fundraiser and a familiar presence within the team, known not just for her commitment, but for her openness in sharing her story.

Even when injuries and medical setbacks prevented her from racing, Holly stayed connected. She showed up to cheer on her teammates, mentored new runners, and continued to raise awareness about NF. Her involvement was never just about crossing a finish line-it was about making sure that progress continues for the entire NF community.

Looking back, Holly often reflects on how little she understood about NF as a child. Because her early symptoms were mild, there was no sense of urgency. No one explained how the condition could evolve over time or how different her life might look years later.

The absence of urgency is something she thinks about now.

NF doesn't always demand attention right away. It can be subtle, even easy to overlook in its early stages. But over time, its impact can grow, sometimes quickly, and often in ways that are difficult to predict. What feels manageable in one moment can shift in the next.

That reality is part of what drives Holly to continue sharing her story.

Today, as she approaches 50, she is still running, still recovering, and still navigating the complexities of living with NF. She is also thinking about the future-her own, and Hayes's-and what it will take to ensure that they, and others like them, have better options than she did growing up.

Because for Holly, one thing has become clear: waiting isn't really an option.

The treatments patients need tomorrow depend on the progress being made today. And for a condition like NF, where symptoms can change and progress without warning, that timing matters.

There is real momentum in NF research right now, and that progress offers hope. But for families living with NF, hope is closely tied to urgency. It's about making sure that when the need arises-whether it's next year or decades from now-there are treatments available.

Holly's story is a powerful reminder of what's at stake.

Not just in the hardest moments, but in the quiet ones, too-when everything seems manageable, and it's easy to believe there is more time.

With NF, that isn't always the case.

And that's why the work to drive treatments forward can't wait