Kye Huggins

Kye’s Bright Spirit
Kye Huggins is five years old, born on July 10, 2020, and if you ask his parents, Tonya and Ryan Huggins, to describe him, the first thing they’ll tell you is that he fills every room with energy.

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

The middle child in a busy household, Kye fits the role perfectly. He is silly, talkative, endlessly creative, and has a heart that seems too big for his small body. Kye loves crafting, creating, and gardening, and proudly refers to himself as “the best chef in the world.” More than anything, he loves giving gifts and making the people around him feel special.

He’s the life of the party—always talking, always laughing, always finding ways to bring joy to the people he loves.
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, like headaches, facial changes, and now double vision. Concerned, they called their primary care doctor’s on-call line, who advised them to go to the emergency room.

Around 10:30pm that night on September 7, 2025, Tonya gently woke Kye up and took him to their local ER.
Doctors performed an exam and didn’t find anything obvious, but recommended a CT scan just 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, which was causing the headaches, the double vision, and the changes in how he moved.

Kye understands that something in his brain is making him feel different.

But he doesn’t yet know the full weight of the diagnosis.

His older brother, who is seven, has been told the same explanation. His two-year-old sister doesn’t fully understand, but she notices the difference. Sometimes she simply pauses to watch him. Tonya and Ryan believe she senses that something has 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 DIPG tumors. He completed radiation in mid-October.

Recovery has been slow.

Some children regain energy quickly after treatment, but for Kye the process has taken longer. Nearly three and a half months later, he is just beginning to feel a bit more like himself again. He can walk on his own, though he often needs 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 matters most—comfort, joy, and time together as a family.

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

Follow-up MRIs since radiation have shown that the tumor has remained stable for now.

Surrounding Kye with Care
In late November, Kye began receiving hospice care at home. His hospice team has become an essential part of his support system, helping manage pain and discomfort while allowing him to remain at home.

His oncology team at Doernbecher Children’s Hospital continues to work closely with hospice providers to ensure Kye receives the best possible care. Together, they are focused on what matters most: keeping Kye comfortable and helping his family make the most of every moment.

During this overwhelming journey, the Huggins family has also found guidance and support through the My DIPG Navigator program, created by the ChadTough Defeat DIPG Foundation to help families facing a DIPG 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 the right questions, and find trusted resources, often during the most uncertain and frightening moments. For Tonya and Ryan, that support has meant everything.

“ChadTough, especially the My DIPG Navigator program, has been one of the most helpful things to us during this journey,” Tonya says. “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
Even as he faces unimaginable challenges, Kye remains the same joyful boy Tonya and Ryan have always known.

The little boy who loves crafting, gardening, and cooking.
The one who proudly calls himself the best chef in the world.
The one who never stops talking.
The one who lifts everyone’s spirits.
The family’s hype guy.
And always, the life of the party.