COLUMBIA, SC (WLTX)- Six-year-old Declan Alexander loves cars, Spider-Man, and playing with his little sister, Lilly.
He was diagnosed with autism after struggling in school. But his parents saw his speech regress and a few other symptoms, that evaluation just didn't fit, so they took him in for an MRI.
"And that's when we heard the word Leukodystrophy for the very first time," said Declan's mother, Shannon.
Leukodystrophy is a degenerative disease, and there is no cure once the symptoms start showing up.
"We honestly just thought that he was going to have time," Shannon said. "It wasn't until we started looking at the Leukodystrophy foundation site that we realized that he wasn't going to have time, and that we were hopefully going to have two to four more years left with him. And that's when we decided that we needed to make those years the best they could be, and that we needed to make the good times really good."
Starting with a balloon release--hundreds of them, each tied with a note telling Declan's story.
"Declan loves balloons so it really was just a great idea." Shannon said. "And he enjoys it. He enjoys the fact that his balloons are going to fly high and there's so many out there, they're like all his little dreams."
Now the Alexander family is celebrating each day, and they're committed to raising awareness about the disease.
"Had we not pushed for that MRI, we still would not know," Shannon said. "He would still be living with the diagnosis of autism, and we would have lost a lot of months before we found out, a lot of really valuable months. And we're so thankful that we have those months now."
Declan is still smiling, laughing, and loving superheroes, perhaps unaware that he's becoming one himself.
"What we would like to see is Declan be at least a small part of saving other children," Shannon said. "Because he's always going to be a hero to us. But we would like everyone to know him as a hero too."
To lean more about Leukodystrophy, Visit the United Leukodystrophy Foundation website.
