Ella Sargent, 7, is believed to be the only child in the state currently living with neuro autosomal dystrophy, according to her mother, Amanda Sargent.
“It’s a progressive brain disease, and it is fatal,” Sargent said.
Ella’s symptoms first appeared at age 4. Her parents sought medical help after they noticed disturbances in her walking.
Two years of doctor’s visits yielded no answers. Then the family was put in touch with a physician who has been featured on Discovery Health’s “Mystery Diagnosis.”
The Sargents now know the name of the disorder that has stolen their daughter’s ability to walk and communicate as well as her gross motor skills. However, information beyond a name is limited.
“There is just not enough research on it to give us anything else,” Sargent said.
The Sargents began donating to the Make-A-Wish Foundation several years ago, never expecting that they would one day be the ones in need.
Ella, her parents and four siblings will be traveling to Disney World in November for a week-long vacation.
“She sees the commercials for Disney World and says, ‘Me, me, me!’ So I know she wants to go,” Sargent said.
Sargent’s students at Parrish Elementary School are showing their support by having a penny drop for the Make-A-Wish Foundation.