CHARLOTTE, NC (WBTV) - This is Erin. She lives in Charlotte, loves coloring, tea parties and playing doctor with her stuffed animals. Like many girls her age, she loves princesses and ballet class.
She's in kindergarten. Every day she wears a special backpack with a feeding tube; she must have it on 22 hours a day.
Erin has Mitochondrial disease. Never heard of it? You're not alone. It's a lesser-known but difficult condition that affects mostly children. It means some of Erin's cells don't produce enough energy to properly function.
It's difficult to diagnose because the range of symptoms runs the gamut... everything from seizures to major organ failure, poor growth to Alzheimer's.
"Symptoms can be strokes and severe developmental delays," Erin's dad, Mike said. "Inability to walk, talk, see, digest food and a lot of other complications."
Mike reached out because he wanted to share what's happening in Charlotte this Saturday, October 14th, which happens to be Erin's 6th birthday.
The largest UMDF Energy For Life Walk (Charlotte) in the United States - the main fundraising walk for Mitochondrial Disease - will take place at Charlotte's Freedom Park. The goal is to raise money and spread awareness for this underfunded illness.
Treatment options are limited, because again, not much is known about this disease. But Mike says he hopes once more people become aware, better funding to advance treatments and testing will follow.
"We have raised over $28,000 so far to help the United Mitochondrial Disease Foundation," he said. "I don't believe the walk received any media coverage last year, but we're not letting that stop us."
Glad you wrote, Mike. Here's a post people can easily share to help spread the word about Erin, Mitochondrial Disease and Saturday's walk.
GO HERE TO REGISTER OR LEARN MORE >> http://tinyurl.com/CLTWalkUMDF
Happy early birthday, Erin. Keep dancing and welcome to #MollysKids. We're here to cheer you on.