Diagnosed: April 2013 at age 8
Location: United States

“They have spent their lives in various therapies, doctor’s offices, labs and hospitals.”

Julia & Maya were born fighters. After a difficult pregnancy, pre-term labor and 7 weeks of bed rest, they were born at 34 weeks with a rare condition called twin-to-twin transfusion syndrome. Both girls were diagnosed with hypotonia and developmental delay. They have spent their lives in various therapies, doctor’s offices, labs and hospitals. At 2 they were diagnosed with autism, at 4, mitochondrial encephalomyopathy, with defects in complexes I & III. At 8, CDKL5.

Julia & Maya cannot perform basic daily living skills. They cannot speak, use utensils or dress themselves. They have low energy preventing them from walking or playing for any extended period of time. They cannot tolerate heat or direct sunlight. I never know if they will be able to walk from the car to the entrance of a store without collapsing.

But they are happy & they are fighters.

With funding for research, we can keep Julia & Maya healthy and active!

Written by: Gina Gareau-Clark (Parent)