The opportunity to share my personal story through my debut picture book, as the author-illustrator of Yumi and Monster, at Pixar was an incredible core memory experience. The best birthday gift I could have received.

It’s Rare Disease Day, so I wanted to share an honest snapshot of what a progressive rare disease can feel like.

This progressive rare disease has broken my heart a hundred times in a hundred different ways, but it also has been healing.

If even a celebrity is left on their financial knees due to illness, then how do any of us stand a chance?

Actor Van Der Beek died of colorectal cancer on February 11, at age 48, leaving behind six children and a wife. James was diagnosed in 2023. He died 2.5 years later. Colon cancer is the leading cause of cancer deaths among those under 50 and the second leading cause of cancer overall.

Instead of James spending his last days focused on what mattered most— his family, friends, and final moments with the world and self— James’ last 30 months were filled with figuring out not only how to stay alive, how to pay for it, but as the breadwinner, thoughts of what would become of his beloved family after he’s passed.

The mythology that if you work hard enough, you’ll have access to life has been broken with James story. The dilemma of paying for a multi-million-dollar cancer treatment is a story for many Americans, except this one is a celebrity. A GoFundMe campaign created for the family of the late James Van Der Beek has raised more than $2 million. But this is not the story for everyone. 

A new year, Instagram vs Reality. So far, the new year has brought the invitation to speak and share my story + debut picture book, Yumi and Monster, at Pixar in the spring AND at LA Children’s Hospital during Rare Disease Week. Normally, I don’t share before they happen, but the excitement of Pixar + Children’s Hospital is too much. This and Yumi and Monster winning an award are my big 2026 news, but the reality is I’ve not been well, and this year has already been a challenge.

This photo is from New Year’s Day 2 years ago. How I look and feel since December is more like the second photo.