Seattle mom shares daughter's battle with rare genetic disorder

Willow Hanson (KOMO Photo)

SEATTLE -- Katie Hanson credits her daughter Willow with saving her life.

"Just due to normal prenatal care, it was realized that I was developing cervical cancer," Katie explained. The cancer was in very early stages, and Katie delayed treatment until after Willow was born. Without her pregnancy, she might not have discovered the cancer until it was much more advanced.

"Still today, I see her as a blessing everyday," Katie said.

Willow's blessing goes well beyond that cancer diagnosis. Willow has an extremely rare metabolic disorder called I-cell disease. It is unrelated to Katie's cervical cancer. Instead, Katie describes I-cell as a mutation in Willow's DNA, causing cells to build up in soft tissue.

It's most visible in Willow's gums, but it also affects her joints, her airway, spleen, liver, heart and more. The average lifespan of a child with I-cell is three to five years.

"We're super excited that she's made it to two," Katie said. "Like, every birthday is immaculate and a huge milestone, but it's very bittersweet as well because each birthday is kind of like a step closer to that really scary period when most of these kids end up losing their battle."

So Katie is devoted to making every moment in Willow's life a happy one.

"She has so many limitations, but none of that affects, none of that limits her ability to love or find joy."

And she wants to spread awareness of I-cell, in hopes knowledge leads to research and one day, to a cure. To learn more, visit the Yash Gandhi Foundation.

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