These aren’t you’re average surfers.
These kids, some as young as two years old, have a debilitating illness called Spinal Muscular Atrophy or SMA.
This genetic mutation limits their ability to walk, eat or in some cases, they can’t even breathe without a ventilator.
But Saturday these kids aren’t focused on what they can’t do. Instead, they are looking to surf away SMA.
And while the kids are out in the surf, there’s not a dry eye on the beach. There were quite a few family members, loved ones and volunteers, and the volunteers do it because it’s truly a passion.
Jeremy Darcy is one of the surfers on the board with the kids.
He’s a San Diego native and a lifetime surfer.
He’s also a chemist and serves on the team of researchers who worked to develop a revolutionary treatment for SMA called Spinraza.
His drive to find a cure started back in high school.
“A friend of mine passed away when I was very young to cancer and was able to really spur my interest in such a detrimental disease,” Darcy said. “So upon him, I decided to go forward with science to UCSD and learned physiology and neuroscience to help better the advancement of the drugs at least and got involved with Ionis and that’s been the best part of my life so far.”
Lauren Gibbs has been on the treatment and so far she says it’s giving her the ability to live on her own.
“I think it’s definitely maintained my strength, which is all I could ask for,” Gibbs said. “I’m able to drive by myself and live independently at college. So it’s been a great experience for sure.”
Lauren’s success and events like this one give hope to families like the Lopez family and four year old Gia.
“So grateful to everyone that put this together,” Gia’s mother Ruby Lopez said. “So, so incredibly grateful to all the volunteers, so happy. I feel like she can do anything, you know, just a little different than everyone else.”