top of page



Daphne is Sweet, Spicy and Stubborn 5yr old who loves her family, especially her big sister Adelaide, who teaches her how to be extra rotten, bubbles, animals, swimming, slurping udon noddles, eating sushi and playing with her friends at her daycare.

She was diagnosed with Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate (LTBL) also known as Combined Oxidative Phosphorylation Deficiency 12 from EARS2, shortly after she turned 1yr old.  You can read more on this under the 'Science' page.

Daphne has changed so much it feels like in such a short time but I certainly wouldn't describe it that way when we were waiting and hoping that she would develop any skill, something close to that of a normal child when she was younger.

From meeting other families whose children are older with the same condition, I learned they walk at 3, and talk at 5 (now this is changing with early intervention which is amazing).  Daphne so far is following along.  She started walking independently in Feb 2019.  She switched from in-home daycare to preschool in September and loves all the kids.

She is incredibly strong and brave and works hard each and everyday.

bottom of page