Finding Light in Darkness: A 6-Year-Old Chronic Illness Warrior's Story

When David and his wife welcomed their son, Sawyer, into the world, nothing could have prepared them for what came next. 

At just 5 days old, Sawyer was diagnosed with an imperforate anus — a rare, life-threatening condition in which the body has no opening to pass waste. Emergency surgery was immediately required, and doctors performed a colostomy to create a temporary opening. 

But the challenges didn't end there. 

Sawyer's colostomy didn't heal properly, and more surgeries followed. Doctors performed an ileostomy, bringing his small intestine through an opening in his abdomen to allow waste to exit without passing through the large intestine. That, too, led to dangerous blockages, and Sawyer was placed on a feeding line.

Now at 6 years old, Sawyer lives with a chronic illness that affects how his body signals when he needs to use the bathroom. Every night, he undergoes a colon flush through a port in his bellybutton. It's a lifelong condition — and has brought Sawyer and his family closer together. 

"I think honestly, it helped us be better people and just be more understanding and more loving of one another in our own family. We rallied around Sawyer and his situation. We've already faced the hard stuff together, and now we're stronger for it. But that doesn't mean it was easy," said David, Sawyer's father. 

During one of Sawyer's routine hospital stays, he found a reason to smile — something as simple as a hospital gown. 

"I just remember his eyes lighting up when he saw the gown, it was soft, it felt better, and he was just in heaven," David said. 

Starlight Gowns are soft, colorful, and feature many characters from kids' movies and TV shows. They're designed to bring comfort, confidence, and a sense of normalcy to children facing chronic illnesses and their families who need chronic illness support. And for Sawyer, they sparked his imagination. 

"He started imagining he was the character, and the nurses played along," David said. 

Each day, they would update the whiteboard with the name of whatever character was on his gown that day. If someone came in and asked for "Sawyer," he wouldn't respond — but if they called out the character on his gown, his face would light up. "Yep, absolutely!" he'd say with excitement. 

Movement was also key to Sawyer's healing, and when he wore his favorite hero, he walked the halls proudly, making sure everyone knew who he was that day. 

"You could see the light come back in his eyes after a long, hard procedure. Every gown was a big deal."

Sawyer has endured more than most people face in a lifetime — eight surgeries, countless hospital visits, and the kind of uncertainty that would challenge even the bravest adults. And yet, Sawyer shines. 

He laughs when he can. He smiles through pain. And finds the strength to get through each day. 

When asked what advice he'd give to other kids in the hospital, he quickly answered: 

"Don't be afraid." 

He's a chronic illness warrior who inspires hope in everyone around him — showing kids everywhere that even in the darkest moments, there's a light at the end of the tunnel. 

For Sawyer's parents, those long months in the hospital were filled with anxiety, exhaustion, and sleepless nights. But for his siblings, Noah and Penny, the experience was quiet and lonely. 

"It was pretty lonely. There always had to be at least one parent at the hospital with him, and we didn't get to visit very often," said Noah. 

For six months, the family was divided. For kids, that separation can feel endless. The playful moments of games, movie nights, and laughter were replaced by hospital rotations and distance. 

"Use every single moment you have with your sibling," Noah said when asked what advice he would give to others. 

For Penny, the ache of missing her brother was deep. "Sometimes it's kind of lonely 'cause I don't get to play with him," she said. 

But when she could visit, she cherished every moment. "I took care of him like a nurse," she said proudly. 

They painted together, played board games, and created memories between checkups. 

"It made me feel special to take care of him. I missed him a lot." 

When one child is hospitalized, the entire family carries the weight. Noah and Penny's words are a reminder that siblings are affected too but support each other with hope and love. 

Starlight Gowns don't just help the children who wear them — they help the entire family navigate chronic illness management. They bring comfort in moments of chaos and courage when everything feels out of control. 

While many of Sawyer's surgeries are behind him, his journey continues. Your support helps provide children like Sawyer — and their families — with the strength to move forward when time feels frozen, and hope feels distant. 

July is Chronic Illness Awareness Month, and you can transform hospitalization into a positive experience for more kids like Sawyer.