Meet Hailee: 2025 CMN Local Champion

Hailee was only 3 years old when she was diagnosed with Morquio Syndrome, a rare genetic disease that impacts 1 in 300,000 people around the world. For patients with Morquio, their bodies lack the enzyme that breaks down the complex sugar chains, which accumulate in their bones, organs and soft tissues. There is currently no known cure.

To make matters worse, Hailee’s dad, Jason, lost his job the week before she received her diagnosis.

“We were terrified,” Hailee’s mom, Tiffany, recalls. “It was so much life-changing information all at once. To try to even comprehend the financial implications was completely overwhelming.”

Thanks to uncompensated care, which makes it possible for every child at Seattle Children’s to receive care regardless of their family’s ability to pay, Tiffany and Jason were able to focus on what mattered most: getting Hailee the care she needed. Over the past few years Hailee has undergone enzyme replacement therapy and a series of major surgeries.

Today, Hailee is a bright, charismatic child in third grade and dreams of YouTube stardom.

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