SEPT. 1, 2022, 4:45 P.M.

Emberly is 3 1/2 and about two months ago we noticed she was having trouble with walking, and was shaking the majority of the day. Her brother was diagnosed a week before with a rare Mitochondrial Disease called Leigh’s Syndrome with the Surf1 Gene. Knowing what her brother has, we took her into the hospital where they found on her brain scan consistency with the same disease, Leigh’s Syndrome like her younger brother.

Leigh’s Syndrome is a terminal progressive disease that there is no cure for. Emberly has trouble walking, but has gained some strength back from a lot of physical therapy every week. Leigh’s Syndrome affects their central nervous system, ultimately causing them to lose the majority of the skills they have gained over time. Emberly is a very active toddler. She loves to run around and play outside. This disease has taken a lot of her strengths that she had before, making it more difficult for her to do the things she loved.