Spencer’s NF Story: More Than a Mullet

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• Spencer's NF Story: More Than a Mullet

August 11, 2026 Featured, Featured EU, NF1 , Story of NF

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If you asked Spencer to introduce himself, he probably wouldn't start by talking about NF.

He'd tell you about music. About gaming. About Green Day. He'd probably mention his legendary mullet, which started as a way to cover scarring after surgery to remove a large plexiform neurofibroma and somehow became part of his personality. As Zoe, Spencer's Mom, writes, it now has "its own reputation, fan club, and possibly more confidence than the rest of us combined."

He'd also have a hard time choosing between his two favorite foods.

A southern fried chicken burger and spicy nachos are tied for first place. Choosing between them, Zoe writes, feels "medically impossible."

That's Spencer.

NF1 has been part of Spencer's story since he was just three months old, but understanding what that truly meant took time.

There was no family history-what Zoe describes as "no genetic breadcrumb trail leading us here." The early days were filled with appointments, scans, medical language the family had never heard before, and trying to make sense of what life with neurofibromatosis would look like.

"As a family, we learned very quickly that NF is unpredictable," Zoe writes. "Some days looked 'normal' from the outside, while behind the scenes there were challenges most people couldn't see."

By the time Spencer was three years old, he had also been diagnosed with neuroblastoma. Over the years, NF1 continued to shape nearly every stage of his childhood. Hearing loss. Learning difficulties. Tumors that affected not only his health, but the way he moved through the world. After surgery to remove a large plexiform neurofibroma, he required a cervical neck fusion and had to relearn how to walk.

As Zoe reflects, "Watching a child rebuild something so fundamental changes you forever."

But hardship never became Spencer's identity. Instead, it shaped the way he connects with other people. Looking back, Zoe doesn't point to a single defining moment.

"There hasn't been just one defining moment," she writes. "NF is more like a series of moments that slowly change you over time."

Younger children facing NF, surgeries, or oncology appointments often gravitate toward Spencer. Having lived through many of those same experiences, Spencer has become the kind of mentor he never set out to be.

"He became a mentor without ever trying to be one," Zoe writes.

One of the highlights of Spencer's life was seeing Green Day through his Make-A-Wish experience, turning a difficult chapter into an unforgettable memory. He loves being surrounded by good people, loud music, laughter, and friends, and he's known for finding humor even during the toughest moments.

That sense of humor carried him through one of his most difficult treatments.

After years of advocating for access to a MEK inhibitor, Spencer hoped it would help shrink his plexiform neurofibromas. Instead, the treatment caused painful side effects and wasn't the right fit for him. True to form, Spencer jokingly referred to the painful ulcers on his scalp as his "cancer holes."

His experience reinforced something his family has learned again and again: no two NF journeys are the same. It's why they continue to believe so strongly in research and in creating more treatment options for people living with NF.

Today, Spencer is facing the biggest challenge of his life: a grade 4 glioblastoma linked to NF1.

"There have been moments of fear so enormous they barely fit into words," Zoe writes.

Yet even now, Spencer is still looking ahead.

Like many young adults living with NF, one of his biggest worries is whether he might one day pass the condition on to children of his own. It's a question that adds another layer to thinking about relationships, marriage, and the future.

But Spencer is still planning for that future.

A future filled with music, laughter, purpose, and the people he loves.

As Zoe writes, "NF may influence the path, but it doesn't define the person walking it."

For Spencer, that's more than a motto.

It's the life he continues to build every day.

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