CINCINNATI (FOX19) - The parents of two children, who have a lifelong disease, believe their continued push for a cure is starting to pay off.
Emma and Nicholas Lockwood both have a rare disease called SMA, or spinal muscular atrophy.
Their parents, Kevin and Beth, said they first learned about the disease when Emma was born 19 years ago.
“After a few months, we noticed she wasn’t reaching some of the milestones - not able to hold her own head up," Kevin said. "She just seemed kind of floppy.”
Emma’s parents said doctors told them that their daughter had SMA.
“Kind of a devastating diagnosis to be honest with ya," Kevin said. “Life expectancy is two years of age, and you know you can imagine as parents hearing that news for the first time, it’s just kind of devastating as parents.”
A year and a half after Emma’s birth, their son Nicholas came into the world. It wasn’t long, Kevin said before Nicholas was also diagnosed with SMA.
“They become almost, for type one patients especially, almost paralyzed," Kevin said. "Being able to sit up on their own, they can’t do it. They can’t eat on their own. They really can’t breathe on their own 100-percent of the time.”
Once Kevin and Beth learned that there is currently no cure for the disease, they made it their mission to change that.
The couple says they launched a local chapter of “Cure SMA.”
“It’s an organization that really promotes research for SMA," Kevin said. "It also provides different support, like family support, and so forth.”
Because of their dedication to the cause, the Lockwoods say they have raised more than $1 million.
As of August, Kevin said there is now a new treatment option on the table too.
“It’s called Evrysdi," Kevin said. "It’s something that’s orally taken, so it’s done through their G tubes.”
In a matter of weeks, Kevin and Beth say the medication has already had dramatic effects.
Emma, for the first time ever, is holding her head up on her own, and Nicholas is moving his mouth again after losing the ability to smile.
“Now watching them get stronger every day and do new things, it’s definitely been a joy to watch and be a part of," Beth said.
The Lockwoods said their fight for a cure is far from over, and there is still more work to be done, but seeing their children overcome daily challenges and survive against even the most severe of circumstances, is what they would call a success.
“It’s meant the world, and everything we’ve done up until this point in the 18 years we’ve been trying to raise money and so forth, it’s really starting to pay off now,” Kevin said.
The Lockwoods said SMA affects the muscles, not the mind, so both Emma and Nicholas can communicate. Their parents said they are both incredibly smart and are currently in online schooling.
To learn more about SMA, visit the Muscular Dystrophy Association’s website.