Kye Huggins

Kye Huggins was five years old, born on July 10, 2020, and if you asked his parents, Tonya and Ryan Huggins, to describe him, one of the first things they would tell you was that he filled every room with energy.

“He’s our hype guy,” they would say with a smile.

The middle child in a busy household, Kye fit the role perfectly. He was silly, talkative, endlessly creative, and had a heart that seemed too big for his small body. He loved crafting, creating, and gardening, and proudly referred to himself as “the best chef in the world.” More than anything, Kye loved giving gifts and making the people around him feel special.

He was the life of the party — always talking, always laughing, always finding ways to bring joy to the people he loved.

But in the summer of 2025, subtle changes began to appear.

Something Didn’t Feel Right

It started with headaches.

At first, the symptoms were easy to dismiss. Like many young children, Kye occasionally complained of head pain, but medical visits didn’t reveal anything concerning. Soon after, Tonya and Ryan noticed a slight weakness on one side of his face. It was subtle enough that they weren’t entirely sure what they were seeing.

Then came the moment that changed everything.

One day while at the pool with his dad, Kye said something unusual. He told Ryan that he was seeing two daddies.

That evening, Tonya and Ryan talked through all the symptoms that had been quietly adding up — headaches, facial changes, and now double vision. Concerned, they called their primary care doctor’s on-call line and were advised to go to the emergency room.

Around 10:30 p.m. on September 7, 2025, Tonya gently woke Kye and took him to their local ER. Doctors performed an exam and didn’t find anything obvious but recommended a CT scan to rule out anything serious.

That scan changed everything.

A Life-Altering Diagnosis

After reviewing the scan, the doctor returned with difficult news: they had found a mass.

Tonya was told to drive immediately to the children’s hospital in Portland. She called Ryan, and together the three of them made the hour-long drive to Doernbecher Children’s Hospital.

Even then, they didn’t yet know what they were facing.

Over the next day, Kye underwent further testing, including a full MRI. Tonya remembers wondering why they were being sent to oncology. The family was confused and frightened.

Then, on the afternoon of September 9, doctors delivered the diagnosis: Kye had diffuse intrinsic pontine glioma (DIPG), an aggressive childhood brain tumor with no known cure.

The news was devastating.

Explaining the Unexplainable

In the days that followed, Tonya and Ryan faced the heartbreaking task of explaining what was happening to their young son.

At first, they told him his brain was “a little sick.” Later, they explained that he had something called cancer and that a part of his brain had started growing too fast, causing his headaches, double vision, and changes in how he moved.

Kye understood that something in his brain was making him feel different, but at just five years old, he did not know the full weight of his diagnosis.

His older brother, who was seven, was given a similar explanation. His two-year-old sister couldn’t fully understand, but she noticed the difference. Sometimes, she would simply pause to watch him. Tonya and Ryan believed she sensed that something had changed.

In those early days after diagnosis, Kye’s parents were suddenly faced with a flood of difficult decisions, unfamiliar medical language, and the overwhelming reality of navigating a disease that is every parent’s worst nightmare.

Focusing on Time Together

In late September, Kye began fractionated radiation therapy, the standard treatment used to temporarily slow the progression of DIPG tumors. He completed radiation in mid-October.

His recovery was slow. While some children regain energy quickly after treatment, Kye’s process took longer. Over time, he began to feel a bit more like himself again. He was able to walk on his own, though he often needed help with many daily activities.

After careful consideration, Tonya and Ryan made a deeply personal decision: they would not pursue additional clinical trials or treatments that would require long hospital stays. Instead, they chose to focus on what mattered most — comfort, joy, and time together as a family.

“We want him to be as happy and comfortable as possible,” Tonya said. “And to spend as much time as he can with family and friends.”

Follow-up MRIs after radiation showed that Kye’s tumor remained stable for a period of time.

Surrounding Kye with Care

In late November, Kye began receiving hospice care at home. His hospice team became an essential part of his support system, helping manage pain and discomfort while allowing him to remain surrounded by the people he loved.

His oncology team at Doernbecher Children’s Hospital continued to work closely with hospice providers to ensure Kye received the best possible care. Together, they focused on what mattered most: keeping Kye comfortable and helping his family make the most of their time together.

During their overwhelming journey, the Huggins family also found guidance and support through My DIPG Navigator, a program of the ChadTough Defeat DIPG Foundation created to help families facing a DIPG or DMG diagnosis navigate the complex medical and emotional challenges that come with the disease.

Through the program, families are connected with experienced nurse navigators who help them understand treatment options, coordinate care, ask questions, and find trusted resources — often during the most uncertain and frightening moments.

For Tonya and Ryan, that support meant everything.

“ChadTough, especially the My DIPG Navigator program, has been one of the most helpful things to us during this journey,” Tonya shared. “When everything feels overwhelming and you don’t know where to turn, having someone who understands this disease and can help guide you means so much. We are incredibly grateful.”

Programs like My DIPG Navigator exist so that no family has to face DIPG alone.

A Heart That Keeps Giving

Throughout everything Kye faced, the joyful spirit his family knew and loved continued to shine through.

He was the little boy who loved crafting, gardening, and cooking.

The one who proudly called himself “the best chef in the world.”

The one who never stopped talking.

The one who lifted everyone’s spirits.

The family’s hype guy.

And always, the life of the party.

Kye’s life was far too short, but the joy he brought into the world was immeasurable. He had a gift for making people feel special, and that gift lives on in the family and friends who love him and carry his memory forward.

Kye’s story is also a heartbreaking reminder of why this fight matters. Every child diagnosed with DIPG deserves more time — more birthdays, more laughter, more opportunities to create, explore, and simply be a kid. At ChadTough Defeat DIPG Foundation, we continue this work in honor of Kye and all the children whose lives have been impacted by this devastating disease.