Norwalk's Elizabeth Piro has a rare mitochondrial disease called Kearns-Sayre Syndrome (KSS).
Her mother, Paula, says her daughter has a hard time staying energized.
"Her day has to be structured around making sure she gets enough rest," she says.
Currently, there is no cure for Lizzy's disease. That's why her family and friends gathered Saturday for Lizzy's third annual Walk for KSS at Calf Pasture Beach.
Lizzy's cousin, Keelin Walsh, started the walk three years ago.
"She has a lot more disabilities than your normal 14-year-old girl," she says.
Besides constantly having her energy level monitored, Lizzy needs to use a feeding tube to get most of her calories.
"She eats, but not enough to maintain a healthy weight," Paula says.
So far the family has raised $80,000 for the United Mitochondrial Disease Foundation.
Lizzy's case has also been taken up by the National Institute of Health's undiagnosed disease program.
"The money going to the researchers is really helping," Walsh says.
"Anything going on in the world, we'll be the first to know [through the NIH]," Paula says. "Lizzy will be one of the first people they'll test [a cure] on."
Walsh says the walk isn't just about her cousin.
"There are so many other children affected by mitochondrial disease. It'd be awesome to see other people benefit from [the walk], too."
To learn more about Lizzy and her disease, visit this link:
http://www.umdf.org/faf/home/default.asp?ievent=1066316
