Gavin R. Stevens is four years old, loves music, and is a talented vocalist who’s sung for crowds. He’s also a little boy who enjoys soccer, running, playing the piano, and beatboxing — activities all lovingly captured in a series of YouTube videos by his parents.
But, unlike other kids his age, Gavin faces huge challenges: He is blind.
And now, Marc LaMaina, owner of Lucharitos in Greenport, has taken the “100 Day Beard Challenge”, to help Gavin fight blindness.
“I’m growing my beard for 120 days,” LaMaina said on Facebook. “For every half inch grown at the end of the challenge, I will donate to Gavin’s Groupies Curing Blindness.”
On his Facebook page, LaMaina has called out friends to joing him in the challenge.
Gavin’s Groupies Curing Blindness is a non-profit organization based in Chino, California, to help cure Gavin, who has Leber’s Congenital Amaurosis (LCA); a rare retina disease that has caused him to be blind. The Gavin R. Stevens Foundation has been created to help raise funds and awareness, with the hope of finding a cure.
“I will not be shaving my beard until Christmas Eve. For each inch grown I will donate $1,000 to www.gavinsfoundation.org to help this really cool little dude find a cure for blindness,” LaMaina, who has two young sons, wrote.
Gavin Robert Stevens was born on Oct. 2, 2008. At four months old, his parents received confirmation “of our ever growing worry. Gavin was completely blind,” his parents wrote on his Facebook page.
In 2012, Gavin’s gene mutation was discovered, they added. The NMNAT1 gene mutation is the specific cause of Gavin’s blindness. The goal is to raise money for NMNAT1 research, specifically to treat this type of genetic mutation causing LCA blindness, they said.
“Please join us as we document his journey, fight for a cure, and allow us to open your eyes to a whole new world we now live in. We are amazed at the outpouring of support from family, friends and strangers,” his parents Troy and Jennifer Stevens said. “There is no cure, yet. Research is promising, and reminds us to move forward with fundraising for a cure. Four years ago, we were told Gavin’s gene was unknown, and to hope and pray for a miracle. The miracle happened. We can openly and actively pursue treatment.”
Gavin, his parents said, has benefited from work done by research geneticists Dr. John Chiang and others. “But it will be largely due to his Groupies why a cure may in fact happen for our boy. Those who support near and far, and our family, who is by our side every step of the way. With God’s grace, we are the reason we will be able to make a substantial donation toward this research, that can one day allow Gavin to see things he never has.”
