By Lauren Callahan
WHITE OAK, TX (KLTV) - An East Texas boy has had Spinal Muscular Atrophy Respiratory Distress, or "SMARD", since he was three months old.
And until recently, no one was researching the disease.
Now that a laboratory in Maine is devoted to learning more about "SMARD," three-year-old Dakin Lovelace wants to help.
Dakin Lovelace was a healthy baby, according to his mom Devon. But when he was three-months-old, he stopped breathing. After many doctor's visits, he was diagnosed with SMARD
"And so as a result of that Dakin can't breathe on his own, he can't walk. He can't sit up on his own. Um, we are very fortunate, though, that he's so strong. We're very, very lucky, and he's happy. His brain is not affected at all. He's smart as a whip and he's a happy boy," says Devon.
His parents resigned themselves to the fact that Dakin would always be in a wheelchair and using a ventilator. Until they learned this summer about the Jackson Laboratory in Maine, where a researcher is starting to study SMARD.
"We lived pretty much three years having no hope whatsoever that anything anybody was doing was going to help Dakin," Devon expressed.
There are about 60 known cases of SMARD worldwide.
The Lovelaces' have joined 15 other families in raising money for the disease.
"We've banded together as a small community and are working together to raise money, um to help this research, propel it forward, and they are optimistic and hopeful that they can develop a treatment or a cure for this," Devon says.
The family is hosting their first "Strolling for SMARD" event Saturday morning at 10 am at the White Oak High School track, where Dakin and his family and friends will roll or walk a mile to raise awareness.
"I'm shocked and surprised and so humbled to be part of this community that's pulling together so tightly for a kiddo who needs help," Devon expressed, "It's amazing."
If you can't participate in the "Strolling for SMARD" event, you can still help.
Visit the Big Red Box and click on the SMARD research story.