Finding Hope, Community, and Purpose on an NF Journey
Parenting a child with NF often means learning an entirely new language overnight, navigating specialist visits, unfamiliar medical terms, and questions you never imagined having to ask. Yet alongside the uncertainty, many caregivers discover something equally powerful: a sense of community, a deepened resilience, and an unwavering drive to advocate for their child’s future. In this edition of Tell Me Your Story, Danielle Grover opens up about navigating her daughter Caroline’s NF1 diagnosis and how that journey transformed uncertainty into purpose and hope into action.
Danielle Grover will be the first to tell you that her life is full. A stay-at-home mom of four children under the age of seven; her days are a constant rhythm of school drop-offs, sports practices, blocks on the living room floor, and a healthy dose of Bluey. It’s busy, exhausting, joyful work and exactly where she feels she’s meant to be right now.
Danielle’s third child, Caroline, is three and a half years old. It was just before one of Caroline’s early pediatric appointments that Danielle noticed something small but unexpected: café au lait spots. At first, they didn’t seem concerned, many people have them, Danielle included. But curiosity led her to do what so many parents do: a quick Google search.
That search, paired with a pediatrician who trusted his instincts, marked the beginning of their family’s NF journey. 
A Diagnosis That Changed Everything and Then Changed Again
When Danielle brought up the café au lait spots at Caroline’s appointment, her pediatrician paused. He didn’t dismiss her concerns. Instead, he acknowledged them even taking a moment to look up diagnostic criteria to make sure he didn’t miss anything. He gently explained that while he hoped it was nothing, if Caroline were his own child, he would want her evaluated at an NF clinic.
Within weeks, Danielle and her husband found themselves at an NF clinic, navigating unfamiliar terminology and a growing sense that something bigger might be unfolding. Genetic testing confirmed that Caroline has NF1 but the phone call that followed brought an unexpected layer of complexity.
Caroline has an NF1 whole gene deletion, meaning a section of genetic material including multiple genes is missing. For Danielle, this was the moment that hit the hardest. While she had prepared herself to hear “yes” or “no” regarding NF, she hadn’t expected results that suggested the possibility of a more complex or severe presentation.
“I went numb,” she recalls. “All I could hear were the risks of cancer, intellectual disability, and tumors. Even though the doctors emphasized variability, my brain latched onto the worst-case scenarios.”
It took time, space, and perspective for Danielle to realize something crucial: NF, even with a whole gene deletion, does not define Caroline.
Learning to Live in the Unknown
NF is one of the most variable genetic conditions, and that variability extends to whole gene deletion as well. Danielle describes the early months after diagnosis as a period of grief and adjustment, not just to the diagnosis itself, but to the sudden loss of certainty about the future she had imagined for her child.
“I had to readjust twice,” she says. “First when we got the diagnosis, and then again when I realized that NF doesn’t get to decide who Caroline is.”
Today, Caroline is thriving. She doesn’t have an intellectual disability. She meets milestones in her own way. Like all children with NF, her future remains unknown, but Danielle has learned that uncertainty doesn’t have to mean fear. “There’s more to Caroline than NF,” she says simply.
The Power of Community
One of Danielle’s first coping mechanisms was connection. She quickly found NF Michigan and began talking with other parents who understood what she was feeling about the fear, the questions, and the need to learn everything all at once.
Those conversations were invaluable, but they also taught her an important lesson: the most visible stories are often the hardest ones. Many individuals with milder NF experiences are simply living their lives, unseen.
“It helped me remember that NF exists across a wide spectrum,” Danielle explains. “You have to take everything with a grain of salt.”
Beyond the NF community, Danielle is surrounded by an extraordinary support system, family, friends, and neighbors who show up consistently and enthusiastically. That foundation would soon become the catalyst for something much bigger.
Turning Fear Into Action: The Creation of GiveNF
A few months after Caroline’s diagnosis, Danielle felt an unmistakable pull to do something. She describes it as a desire for control not over NF itself, but over how she responded to it.
“I couldn’t control the diagnosis,” she says. “But I could control whether I tried to make a difference.”
Encouraged by family friends, her sister, and her husband, Danielle took a leap. What started as a conversation quickly snowballed into action. Paperwork was filed. Venues were explored. A board formed.
And GiveNF was born.
GiveNF is rooted in Danielle’s community and focused on two core goals: raising awareness and funding research. While there are already many wonderful organizations that provide advocacy and support, one being NF Michigan, GiveNF wanted to direct its efforts toward local fundraising research because progress there has the power to impact everyone living with NF.
Danielle wanted GiveNF to feel hopeful, positive, and accessible, a space where people want to show up, learn, and contribute.
Hope as a Daily Practice
When Danielle thinks about Caroline’s future, hope is at the center of everything.
“I’m a person of faith,” she shares. “Hope and prayer are what I hold onto that Caroline has as mild a case as possible, that we catch what we need to catch, and that she lives her best life.”
A Message for Parents Just Beginning This Journey
If Danielle could speak directly to a parent hearing “your child has NF” for the first time, her words would be honest and gentle:
“This feels big right now, because it is. But there will come a day when it’s not the first thing you think about when you wake up, and not the last thing you think about before you fall asleep.”
NF may ebb and flow, bringing moments of anxiety and uncertainty, but it doesn’t have to consume a life. For Danielle, building GiveNF is part of how she has moved forward, transforming fear into purpose, and uncertainty into action.
“It’s such an exciting time for research,” she says. “My hope is that what we’re doing helps Caroline and every person living with NF now and in the future.”