Kate and Eli

November 02, 2016

Our hearts are broken. Two children with Pearson Syndrome both passed over the last few days. The entire Pearson Syndrome family is devastated. It is gut wrenching for us and other parents.

Kate and Eli were exceptional kids. And they weren’t just special because they were the oldest living children with a terrible disease. They were funny and determined. Kate lost most of her baby teeth by tubing along the river when she was younger. Eli scored a touchdown for his high school football team and was highlighted on Sports Illustrated. Both left a mark in their community. Kate was known as “The Mayor of Gibsons” and Eli’s town dedicated a month to mitochondrial awareness in his name. Their schools were better because of them. Kate’s obituary states: “She was an excellent speller, won the Most Determined Award in Kindergarten, and presented an award-winning science project on bath salts in the fourth grade. Kate's parents are particularly proud that she mastered multiple digit subtraction with carries.” Eli told a joke every Friday during his schools’ morning announcements. Classmates proudly wore bELIeve shirts.

Pearson Syndrome is terrible and unfair, but as Kate’s parents said, kids diagnosed with PS do not suffer from it. They live wonderful lives that are cut unfairly short.

The world lost two very extraordinary people. We are thinking of the Mollineaux and Burnette families.