Rocking On With Stargardt
DIY Campaign Success Stories
Adopted into a musical family, Miles Hoyt picked up a guitar at just four years old, and he hasn’t stopped playing since. Now Miles, who has Stargardt disease, and his parents are using music to bring their community together to raise funds for blinding diseases with their DIY fundraiser, Smiles for Miles.
Miles Hoyt is famous in his small beach town, known as the guitar prodigy. At only 12 years old, Miles can be found playing in one of his two bands in the local restaurants and pubs.
Adopted into a musical family, his mom, Renee, and dad, Mike, met doing musical theater in Long Island, New York. And after they got married, Renee and Mike adopted Miles when he was four days old. Miles picked up a guitar at just four years old, and he hasn’t stopped playing since.
But a year later, Miles’ parents took him to the eye doctor, where he was diagnosed with Stargardt disease. Renee and Mike immediately scheduled additional doctor’s appointments to learn more about his condition and did their own research online, as they knew nothing about Stargardt. And being a closed adoption, they couldn’t contact Miles’ birth mother, although they did try.
From searching online, they found the Foundation Fighting Blindness, which helped to give them more insight into the research being done for Stargardt disease. They also found Stargardt groups on Facebook, which gave them a network of other people who either have or know someone with Stargardt.
Miles’ vision decreased quite quickly, so he and his parents had to learn to adapt fast. Luckily, Miles’ natural musical talents made playing the guitar one of the many ways Miles has coped with his vision loss.
“I try to stay positive about life and to help Miles with that too,” says Renee. “I always tell him to remember that we knew about his gifts before we knew about his challenges. There’s no sense in wallowing about it, but instead, find a way to pay it forward and help increase awareness for such a rare disease.”
Now living in Lake Worth Beach, Florida, the Hoyt family has decided to use music to bring their community together and raise funds for blinding retinal diseases like Stargardt disease. Their do-it-yourself fundraiser, Smiles for Miles, first began in 2018 as a music event for Miles to perform. Now, in its third year, Smiles for Miles has transformed into a community music festival, with blues and rock musicians performing along with Miles. Local businesses donate for the fundraising efforts and attend the gig, and the local TV stations come out to cover the event. In 2021, Smiles for Miles raised over $13,700 for the Foundation Fighting Blindness, with more than 200 attendees in-person and donors from across the country.
“I’m not a scientist that is going to find a cure for Miles, but that’s why we want to help the Foundation who is making such a difference,” says Renee. “I love doing a DIY fundraiser because we can put our own personal touch on the event. Smiles for Miles is just one way we keep hope for a cure, and help to raise awareness for Stargardt.”
Miles is a regular performer at Rudy’s Pub, where Smiles for Miles is held. When people see Miles play for the first time, they often have no idea he is legally blind. So, his parents use his performances as an opportunity to educate the community on blindness.
“We like to share about Miles’ Stargardt before gigs to tell people about his blindness, as well to avoid flash photography since he can be so sensitive to it,” says Renee. “We’ve even gotten to know the local photographers around town, so now they know to show up before it gets dark. Everyone’s always so understanding once you explain.”
Miles’ musical talents have really blossomed in the last few years, and he’s become a much more proficient guitar player. Miles and his parents have their own blues/rock band called The Miles Hoyt Band, with Renee on vocals and Mike on rhythm guitar and vocals. Miles also plays in a jazz/blues band with other young local musical prodigies called ETA, which stands for Even Tempered Artists.
When Miles isn’t busy playing his guitar, he attends school virtually, which he’s found extremely effective with his visual impairments. In the last year, Mike has become Miles’ full-time teacher, as Miles previously had a lot of anxiety when it came to school.
“His peers in school didn’t understand that blindness is a spectrum,” says Renee. “One year, when Miles was in third grade, Mike and I, along with the school nurse, went into Miles’ school to help educate the students on his condition, and that really helped.”
Renee also highly encourages therapy as a coping mechanism for anyone with a disability.
“We think about therapy as just adding more tools to your belt,” says Renee. “It gives us and Miles different ways of coping with his blindness on a daily basis.”
Miles’ parents have made sure he has all the accommodations necessary to succeed in life and be an advocate for himself as he gets older. And no matter how much Miles’ vision loss progresses, he’ll always continue to rock on.