RUSSELL COUNTY, Ky. (LEX 18) — A mother's love drives her to pursue experimental treatment as two of her four children battle a rare genetic disease that slowly weakens their muscles.
Laura Moore says every day with her sons is precious and uncertain. Two of her four children, Carson, 12, and Greyson, 6, were diagnosed with Duchenne muscular dystrophy.
"It's a rare genetic muscle wasting disease. So, you know, it mostly affects boys. And my two boys, Carson, he's 12, and Greyson, he is 6, they're going to be trying a treatment called Elevidys," Moore said.
Duchenne slowly weakens the muscles, making everyday childhood moments harder with time. Symptoms usually begin between the ages of 2 and 6, which include difficulty walking, delayed motor skills and frequent falls.
"Everyday kind of activities that is, you know, pretty easy for, you know, any other child, it's really, it's hard on them. You know, that they lose strength," Moore said.
That loss is why the family is choosing to move forward with a one-time gene therapy infusion, followed by months of close monitoring near the hospital.
"There's a lot of unknowns with it, but we have a lot of hope in it too, cause it can give them a better future," Moore said.
Hope rooted in a future Moore desperately wants for her boys.
"I want to give them a better chance, you know, give them a longer life. And you know, I just want, I wanna see them thrive, and you know, we'll do what it takes to get there for them," Moore said.
Moore's brother also had Duchenne. He died before Greyson was born, so she knows first-hand how life-changing it can be.
Still, she says Carson and Greyson are just kids.
"They're strong. They're funny. They're great kids. You know, they're just like any other boy," Moore said.
A mother's courage. A family's hope. And a race against time.
"We've had churches pray over our children and friends and people we don't even know, you know, help us. And that just means so much as a parent, you know. You'll do anything to do what you can for them," Moore said.
You can find the link to the GoFundMe here.
