When Waylon was born, his mother says she felt a kind of love she had never known before—the kind that changes you at your core, that rearranges your priorities, that makes the world feel whole and right in a way nothing else ever has. It was the kind of love that feels infinite, steady, and safe. The kind every parent recognizes instantly and carries forever.
That is what makes this pain so unbearable.
Today, that same mother is watching her four-year-old son slowly slip away from a brain disease no child should ever have to face. There are no words that can fully describe what it means to love so deeply and yet feel so helpless. To hold your child while knowing that no amount of love, strength, or devotion can take the disease away.
Waylon has DIPG—Diffuse Intrinsic Pontine Glioma—a rare and aggressive brain tumor that steals so much, so quickly. It arrives quietly, often without warning, and changes everything. There is no cure. No gentle path forward. No reassuring answers. Only time that moves too fast and decisions no parent should ever be asked to make.
For families facing DIPG, hope looks different. It becomes measured in moments instead of years, in smiles instead of milestones, in memories instead of plans.
And yet—Waylon’s smile is still there.
His sweetness still shines through, even as his body grows weaker. He is still the little boy who loves treats, who sits and smiles for the camera, who wants comfort and closeness. He is still a child who should be worried about scraped knees, bedtime stories, and which toy to play with next—not about hospital visits, symptoms, or the limits of his own strength.
He is still here. But his small body is being asked to fight something unimaginably cruel and unfair.
In the photos shared by his mother, you can see his innocence clearly. You can see the boy he is—not a diagnosis, not a prognosis, not a statistic. Just a child with gentle eyes and a quiet presence. You can also see the life he should still be living, the years that should stretch ahead of him, wide and full of possibility.
The image on the right was taken just 18 months after his diagnosis. In that short span of time, so much has changed. Time has compressed. Days carry more weight. Every moment feels both precious and fragile, as if it might slip away too quickly if not held tightly enough.
Waylon’s mom, Paityn, shared these moments with the world not to ask for sympathy or pity. She shared them to tell the truth. To speak her grief out loud. To acknowledge the reality that her son’s journey has now become terminal.
There is a particular kind of bravery in telling that truth. In naming what hurts. In allowing others to witness a love story that is still unfolding, even as it edges closer to goodbye.
More than anything, Paityn wants the world to know Waylon. Not as a child defined by illness, but as a boy defined by love. She wants people to see him, to remember him, to carry his name and his story forward. Because being known is a way of being held. And being loved—truly loved—does not end when time runs out.
Love does not stop when answers disappear.
Love does not fade when medicine reaches its limits.
Love remains, even when the future feels impossibly small.
A mother’s love does not weaken in the face of loss—it deepens. It becomes louder, more protective, more urgent. It turns moments into memories and memories into legacy.
So what would you tell Paityn, so she knows she’s not alone?
Perhaps you would tell her that her love matters. That Waylon’s life, no matter how brief, is meaningful. That her grief is valid, and her strength is seen. Perhaps you would simply tell her that her son is known, that his story has reached hearts far beyond what she can see.
Help share Waylon’s story—a story shaped by courage, innocence, and a mother’s unwavering love. Because even when time feels like it’s running out, love remains. And love, in the end, is what lasts.
