Finding Clarity in the Fight: The Parr Family’s Journey with NF

When Sean Parr talks about his son James, one thing is immediately clear: joy comes first. 

“He’s the happiest kid,” Sean says. “The funniest, happiest child.” 

James just turned four in January. He loves independence, has “crazy blond hair,” and despite everything he faces, he continues to move through life with a resilience that inspires everyone around him. But for Sean, his wife Hannah, and their growing family, the road to understanding James’ health has been anything but simple. 

Their story is one of uncertainty, advocacy, acceptance, and learning how to find strength in a future that looks different than the one they first imagined.

The early days: from celebration to concern

Sean and Hannah’s journey as parents began with both joy and intensity. James was born via emergency C-section, a moment Sean describes as one of the scariest of his life. But once James arrived safely, those early newborn days felt hopeful. He was a happy, quiet baby, and like any new parents, Sean and Hannah were simply settling into life with their son. 

That changed when James was around three months old. 

The family noticed swelling on one side of his face. At first, their pediatrician thought it was probably nothing serious, but recommended imaging just to be safe. What followed was a long weekend of fear and uncertainty after they were told there was a mass in James’ neck. 

Soon after, they learned James had a vascular or lymphatic malformation. Initially, doctors believed it might be something relatively manageable. But within weeks, when James developed his first cold, the malformation dramatically worsened. 

“What happens with the malformation is all the lymphatic fluid, the channels aren’t developed like ours are,” Sean explained. “It looked like there was a softball coming out of his neck.” 

Further scans revealed the malformations were not only in his neck, but also throughout his chest. 

Learning to live in survival mode 

From there, James’ early years became filled with scans, procedures, medications, and specialist appointments. He underwent sclerotherapy treatments to help manage the malformations and began taking a strong daily medication to keep them from growing. 

For Sean and Hannah, those first two years were spent in survival mode, focusing on the most immediate medical concerns and trusting James’ care team while trying to keep their footing as parents. 

Looking back, Sean sees how differently he and Hannah processed it all. 

Hannah threw herself into research searching online, joining Facebook groups, asking questions, and learning everything she could. Sean, by his own admission, responded differently. 

“I’m so positive it might be a fault,” he said. “I put my head in the sand and I’m just like, ‘Oh, this is fine. It’s going to be good.” 

That difference in perspective shaped how they navigated James’ care together. While Hannah focused on researching and gathering information, Sean anchored their family in hope. Together, they became a steady balance of knowledge and comfort for James. 

A second diagnosis: NF1 

As James’ condition stabilized somewhat, Sean and Hannah finally had room to explore a bigger question: was there something more going on? 

James had several café-au-lait spots and macrocephaly all signs that pointed toward Neurofibromatosis type 1 (NF1). Although NF1 had crossed doctors’ minds earlier, the priority had been treating the vascular malformations first. 

Sean was not entirely unfamiliar with NF1. As a lifelong Cleveland Cavaliers fan, he knew Nick Gilbert’s story and had been aware of NF through the Gilbert family’s advocacy. That prior awareness didn’t make James’ diagnosis easier, but it did make it feel less unknown. 

In February 2024, James underwent blood testing. In June 2024, Sean and Hannah received confirmation: James had NF1. 

Sean describes that moment as a major blow, but also, in some ways, a source of clarity. 

“We needed something to make sense,” he said. “I don’t want to say it helped, because help isn’t the right word, but there was some sort of clarity with the diagnosis.” 

For the first time, it felt like they could stop playing defense and begin to understand what this diagnosis might mean long term. 

What daily life looks like now 

Today, daily life for the Parr family is full and carefully orchestrated. 

James attends school full-time and also goes to speech and occupational therapy four times a week. He receives additional support through the school system, and his parents continue managing medications, scans, and specialist visits. Their home life also recently expanded with the arrival of baby “Weezy” who was born in October 2025. 

In many ways, this rhythm has simply become their normal. 

“We’ve been in it for so long that it’s just our normal,” Sean shared. 

James, meanwhile, continues to grow in his own ways. He is nonverbal, but he communicates using some sign language and a communication device. Sean laughs as he describes James learning how to use that device not just to communicate, but sometimes to avoid doing what he doesn’t want to do. 

“He’s getting manipulative with it,” Sean joked. “It’s very funny to see his brain be shaped without the communication, but it’s still being shaped in the same way as any other kid.” 

And in recent months, there have been beautiful signs of progress. Sean shared that James recently said “mama” for the first time since losing his speech a moment that meant everything. 

The unseen weight of caregiving 

Behind the appointments and therapies is the emotional and logistical weight of caregiving. 

Hannah, a hairstylist by trade, had to step away from work in order to manage the demands of James’ care and their family’s needs. She now handles much of the coordination therapy schedules, medications, insurance battles, and appeals. 

“That alone is like a part-time job,” Sean said navigating insurance coverage for treatments and therapies. 

Though they don’t have family living nearby, Sean’s parents spend a great deal of time with them in Florida and have become an essential support system, helping with school pickups, therapy transportation, and everyday family life. 

Sean is quick to praise Hannah’s strength and organization, describing her as the one who keeps everything “buttoned up.” But he also recognizes how much this journey has changed both of them. 

“It’s weird, because James is going through all this, but we are also growing as people because you have to,” he said. 

Redefining resilience 

Before James’ diagnosis, Sean says he thought resilience meant pushing through obstacles no matter what. But parenting a child with complex medical needs and living with the unknowns of NF1 has completely reshaped that definition. 

“With NF1, you’re not going to get a detailed list that says, ‘This is how you fight through,’” Sean said. “You just have to take what’s given to you and still keep fighting.” 

He describes one of the biggest lessons of this journey as learning that acceptance is not the same as giving up. 

“Acceptance isn’t forfeiture,” he said. “Accepting the diagnosis doesn’t mean we’re giving up. It just means now we have clarity for the fight.” 

That shift in mindset has helped Sean begin to look at the future differently. The life he and Hannah imagined when they were expecting James may not be the life they’re living now, but that doesn’t make it any less meaningful. 

In fact, it has changed the way they define success. 

“The little stuff matters,” he said. “Your wins and your successes, they seem at first maybe small or so hard to get to, but then when they start piling up, it’s so beautiful.” 

Finding strength in community 

For Sean, one of the most important parts of this journey has been connection. 

Hannah found support through online communities, including a friendship with another NF parent whose child is further along in the journey. Sean found comfort in a different way: through connection with NFX and the broader NF community. 

“I had all this energy, all these thoughts about it, and I didn’t have anywhere to put it,” he shared. “Connecting with members of the NF community really helped try to do something positive with it.” 

That sense of community knowing there are other families, researchers, clinicians, and advocates in the fight has mattered deeply. 

“There’s people fighting your fight,” Sean said. “From a small scale to a large scale, there’s resources out there. You just have to ask.” 

A message to other parents 

When asked what he would say to another parent whose child has just been diagnosed with NF, Sean’s answer was honest, grounded, and full of compassion. 

“Take a step back and take a breath,” he said. “You’re not going to solve anything in those first 72 hours. Be with your family.” 

He encourages parents not to let fear and internet searches consume them in those early days, but instead to center themselves, lean on their support systems, and reach out for help when they’re ready. 

“There’s so many resources out there for you as a parent,” he said. “Take what you can. Don’t overdo it. If you’re feeling like it’s too much, get back to that center, which is your family.” 

Moving forward, together 

Sean and Hannah’s journey with James is still unfolding. There are still questions, still scans, still unknowns. But there is also progress, laughter, family, and hope. 

And at the center of it all is James, a little boy who continues to show everyone around him what courage looks like. 

His story is a reminder that while NF may change a family’s path, it does not take away joy, love, or the possibility of beautiful moments ahead. 

For the Parr family, the fight continues. But now, it comes with something powerful: clarity, community, and the knowledge that they are not alone. 

Stories like the Parr family’s are helping bring greater awareness to NF and the families navigating it every day. As more voices are shared, the movement continues to grow. 

You can read more about Sean and James in this feature by Signal Cleveland: A Bow Tie, a legacy and a fight worth knowing