Sight and Song: The Christian Guardino Story
Christian Guardino has been singing for as long as he can remember; it’s the seeing that’s new. As a contestant on “America’s Got Talent” this
past June, Guardino created an instant internet buzz, not
only for his blockbuster performance of the Jackson 5’s
“Who’s Loving You,” but also because he got a “golden
buzzer” pass into the live round of competition.
Guardino, who will be a high school senior this fall
on New York’s Long Island, was diagnosed with Leber
congenital amaurosis (LCA) as an infant. At that time, the
family was told Guardino had the kind of LCA that would
improve or at least not get worse. The information the
Guardino family was given was not valid; LCA does not
improve over time.
Guardino’s mom, Beth, said Guardino’s declining vision
became obvious when he was about 11 years old. “We
were grateful for the vision he had, but when we started to
see his vision decline, we got concerned,” she says.
Looking for information, Beth found the Foundation
for Retinal Research (FRR) online (FRR and FFB
merged in 2016), and the family attended the FRR 2012
Conference in Philadelphia.
“It was so emotional,” Beth says of attending that
conference. “We were literally by ourselves in this for all
those years. To find other people in the same situation; I
don’t think I had a dry eye the whole time I was there.”
The Guardinos’ experience at the Philadelphia
conference, however, was bittersweet. It was during the
conference they first received more accurate information
about LCA, i.e., that Guardino would go completely blind.
But, it was also where Guardino was retested. The family
learned that Guardino’s specific mutation, RPE65, would
make him eligible for a clinical trial for a possible gene
therapy treatment for LCA.
Guardino was 13 when he entered the RPE65 clinical
trial being conducted by the Children’s Hospital of
Philadelphia and Spark Therapeutics. Since then,
Guardino has enjoyed a 75–80-percent improvement in
“I’m still learning how to use my vision,” Guardino says.
“Your brain learns to use the new-found vision,” Beth
“It’s unreal,” says Beth about the treatment and her son's
now being able to see. “It’s like something out of a science
Now the Guardinos want the same experience for other
“We want this so badly for everyone else that we’re
hoping and praying and raising awareness,” Beth said.
“The network of support from other IRD families is really
“What’s so incredible about this experience is that it’s
given me an amazing platform to raise awareness. What
really makes me emotional and happy is that I’ve been
able to reach people with LCA and other eye diseases and
inspire them,” Guardino says.
You can help support the research that restored
Guardino’s vision by supporting the Foundation Fighting
Blindness. Learn more at www.FightBlindness.org.