LIKE A TYPICAL KID HIS AGE, 11-year-old Miles Hoyt enjoys computer simulation games, summer camp trips to Lion Country Safari and the train set that rolls across tracks in his bedroom.
Unlike all kids his age, he plays the guitar like Jimi Hendrix, wears dark stylish sunglasses and hangs out at the neighborhood bar (don’t judge, keep reading).
He’s bright and precocious, “an old soul,’’ as his parents like to say.
And he’s all too familiar with a disease as scary as its name — fundus flavimaculatus, or Stargardt macular dystrophy, a genetic disorder that leads to vision loss during childhood or adolescence.
Miles was 5 when he was diagnosed with Stargardt’s Disease, as it’s commonly known. It causes progressive damage to the macula, the small area in the center of the retina that’s responsible for sharp, straight-ahead vision.
Although he still has excellent peripheral vision, he is legally blind. When he looks straight ahead he sees gray spots and lines. He’s sensitive to light, which is why he often wears those sunglasses.
“Everytime I close my eyes I see a Jackson Pollock painting,” said Miles, one of about 30,000 people in the United States with the disease named for the German opthamologist, Karl Stargardt, who first reported it in 1909.
Although the National Eye Institute says it is rare for people with the disease to become completely blind, Miles understands that his vision, now 20/250, will not improve and will continue to decrease over time, possibly to 20/400 or worse.
He could cry and complain and feel sorry for himself.
Instead, he picks up the guitar and blows audiences away.
“He’s how old?”
That’s usually the first reaction from strangers who see the little kid with the dreads and sunglasses wailing away on “Ruby,” the name of his custom telecaster (a Milescaster, really), to B.B. King’s “The Thrill is Gone” or Howlin’ Wolf’s “Little Red Rooster.”
He still has a lot to learn. But when he plugs in and lets loose, he sounds as good as, and often better than, some musicians four and five times his age.
“The first time I saw him do ‘Voodoo Child’ by Hendrix, I was kind of blown away,’’ said Mark Telesca, the South Florida blues musician who hosts Monday night jams at The Funky Biscuit in Boca Raton.
“His skill level is really advanced for being 11. He’s got a lot of natural talent and an excellent ear. I gave him a tuner to tune up when he sat in with my band and his dad’s like, ‘No, no, he can't even see that.’ He tuned his guitar by ear and it was spot on.’’
Miles has also sat in with The Cravens, J.L. Fulks and other musicians on the South Florida circuit, making connections along the way with people like Jesse Finkelstein of Blues Radio International.
Maybe you’ve seen him at Brewhouse Gallery in Lake Park where he sits in with the electric blues jam hosted by 90-year-old keyboard player Howie Stone.
Next summer, Miles will be one of the youngest students to attend the Pinetop Perkins Blues Master Class in Mississippi after winning a scholarship.
“Miles is just one of the guys, man. We all travel in the same group,’’ Telesca said.
When Miles is not performing at home or around town in The Miles Hoyt Band, a family trio with mom Renee on vocals and dad Michael on rhythm guitar, he can often be found jamming at Rudy’s Pub in downtown Lake Worth Beach.
He also plays in a band with kids his age called ETA (it stands for Even Tempered Artists), featuring Benjamin Collin on trombone, Charlie DeBay on bass and vocals and Ian Allison on drums.
Rudy’s owner MaryBeth Sisoian, a passionate supporter of local music, has embraced Miles and his family.
In 2018, she opened the doors of her popular South J Street venue to host the first Smiles for Miles benefit to raise money for Foundation Fighting Blindness.
On July 25, the third annual Smiles for Miles (after a pandemic-imposed hiatus last year) will feature local musicians such as Ben Brown, Mike Mehlenbacher and Jerry Crepeau playing along with the little man himself.
“MaryBeth has been so generous and wonderful,’’ Renee Hoyt said, adding that the benefit is just a small but significant way that Miles and the community can help fight the disease, for which there is no cure.
MILES WAS FOUR DAYS OLD when he was adopted by Michael and Renee, a musically-creative couple who met doing theater on Long Island before getting married, moving to Connecticut and then Lake Worth Beach.
Before Miles came along, their home was always filled with the sounds of music, either Muddy Waters on Pandora or Renee singing Bob Marley’s “Three Little Birds” or Michael playing The Grateful Dead’s “Ripple” on one of the many guitars in the living room.
One day when Miles was about 3, he asked Michael’s permission to pick up his dad’s “flat guitar,” a stratocaster that was more attractive to the kid than the “fat” acoustic next to it.
Sitting on his father’s lap, and dwarfed by the oversized guitar on his own lap, he strummed the strings and giggled at the clanging sound. Though no one knew it at the time, that fascination would soon propel Miles on a musical odyssey.
For his fourth birthday, his grandparents bought him his own guitar, a mini-Strat. His parents encouraged him to practice. The more he used it, the more the noise he made started to resemble music.
Before long, he was strumming along with Led Zeppelin’s “Kashmir” and Hendrix’s “Foxy Lady.’’
Michael remembers encouraging Miles to try competitive sports. He showed no interest. But he was always picking up his guitar and practicing on the lap steel.
Instead of watching children’s shows on television, he watched videos of musicians like Joe Bonamassa and Tom Petty. One day he saw a video of Robert Randolph performing on the pedal lap steel, a guitar played horizontally across the musician’s lap, and got even more excited.
By the time he was in kindergarten, his parents said, it was clear he’d found a passion that maybe he could build on as he got older.
AROUND THAT SAME TIME, his parents started noticing something disturbing.
Miles kept sitting too close to the television. Then the school called one day to say he was having trouble seeing.
They took him to an ophthalmologist. Miles, who was 6 at the time, remembers wires being taped to his eyeballs to measure the retina. Michael remembers overhearing the doctor whispering words “macular dystrophy” to a nurse.
The news was delivered to Miles and his family more abruptly than Michael and Renee would have preferred.
“The doctor looks at Miles and goes, ‘Well, you’re going blind,’’’ Michael recalled.
When Miles heard the doctor say that, “I couldn't wrap my head around what it meant,“ he said. Noticing that his mother and father were crying, he walked over to a shelf and brought them a box of tissues.
Two weeks later, Michael was at home drinking coffee when Miles came out of his bedroom crying. The reality of his diagnosis was sinking in because he’d been struggling to read.
“It’s not fair, it's not fair,’’ he told his dad, choking back tears.
He would start working with a visual impairment teacher, learn braille and walk with help from a blind cane.
For solace and escape, he tapped his blossoming passion.
“YOU’RE GOING TO HAVE TO use your hearing as your superpower,’’ Michael and Renee told their son.
Unable to read sheet music, he tapped his “superpower” and honed his guitar licks.
Before long it became apparent to his parents: He might have trouble seeing, but the kid can play guitar.
One day when he was 7, he heard the Eric Clapton song Motherless Child. After listening to it a second time, he played it himself nearly flawlessly.
“It was enough to know there’s something special here,’’ Michael recalled. “We were playing together one day and he yells out, ‘Dad, your G string is flat.’ And he was spot on!’’
For his first public performances, Miles plugged in a few times outside of a Lake Avenue storefront and jammed for weekend passersby.
His parents sent him for lessons with guitar teacher Frank Axtell, who studied in Miami under Vincent Bredice, the renowned jazz and classical guitar maestro whose students included Jaco Pastorius and Joe Diorio.
“Miles is a phenomenal kid. He has the potential to be a superstar if he wants to be,’’ said Axtell, who still teaches Miles every Tuesday.
“He has special gifts. He has a great sense of hearing and a natural sense of rhythm. He was born with it.’’
It was slow going at first.
“Being a little kid, he just wants to jam. He always wants to show off in front of me and play behind his head and do his Hendrix moves. But that’s OK because he’s a kid,’’ Axtell said with a laugh.
“In the last two years, Miles has really blossomed and is more proficient. He is learning music theory and he has to learn his major and minor scales and modes and chord progressions.’’
Axtell would like to see Miles learn more classical and jazz guitar, which will make him more diverse and offer more opportunities as if he wants to go professional.
“Miles has a lot of talent and a lot of possibilities,’’ Axtell said. “He has been on the scene with 40-and-over guys who are hobbyists and part-time players and Miles can already play circles around them.’’
AS THE WHITE ADOPTIVE PARENTS of an African American child, Michael and Renee have had difficult conversations with Miles about race and the events that sparked a resurgence of the Black Lives Matter movement.
“Last year with George Floyd and all that has gone on, it has been heartbreak after heartbreak as a parent seeing him at an age where he is aware of the world outside his house,’’ Michael said.
Miles “understands the reality that, unfortunately, once he becomes a teenager he can be perceived as a threat just because of his race. We’ve had to tell him things a white kid doesn’t have to hear in order to survive, that having your hands in your pockets can be seen as hiding something and running in public can be seen as running away from someone.’’
Even as they prepared to adopt, they sought advice from African American friends “about what we lack, what we need to know,’’ Michael said.
When news broke of the Michael Brown killing, Miles’ parents read the Ta-Nehisi Coates book Between the World and Me.
“We took the lessons learned from the book as it opened our eyes to the world around us and the reality of Miles' existence as a black child,’’ Michael said.
And when they first moved to Lake Worth Beach, they brought Miles to the Palm Beach County Sheriff’s substation.
“We wanted to make sure every police officer in town, including the captain, knew Miles personally, so that there was a personal connection,’’ Michael said.
ASK MILES THE QUESTION that’s often asked of kids his age — what do you want to be when you grow up? — and he tilts his head as if to say ‘what do you think?’
Instead, he smiles and politely replies, “I want to be a musician.’’
He’s already a musician.
The only question is: How far will his talents take him?
Michael and Renee said they’ve been careful not to force Miles into a musical career. Instead, they’ve focused on nurturing and supporting a passion that obviously makes him happy.
“I never looked forward to seeing him go down the path of a career in music,’’ Michael said. “Blind people have a high unemployment rate. People with (Miles’) condition sometimes have it worse. But a blind person is on equal footing when it comes to being a musician.’’
Michael said he and Renee have told Miles over and over, “We are not trying to get people to come see you because you are blind. Some people are going to be more curious about you because you are blind. If blindness is going to hurt you in some ways in life, then use it to your advantage whenever you can.’’
People who see Miles play for the first time often have no idea he is legally blind. They just see a kid in dark shades making incredible sounds with a guitar.
Miles tries to immerse himself in music, and that includes cajoling his parents to take him to clubs and bars at night to see his favorite musicians perform live.
He has seen Buddy Guy, Eric Gales, J.P. Soars and one of his inspirations, Robert Randolph, who invited Miles backstage after a show at The Culture Room in Fort Lauderdale.
Miles turns heads just by opening the doors to a club, a little kid entering a room full of adults.
His parents laugh when recalling the looks of shock and disgust on the faces of patrons when they brought Miles to Rudy’s at 10 p.m. on New Year’s Eve 2020.
None of the patrons knew it, but Miles was scheduled to sit in with The Cravens.
“People are looking at us like, ‘How dare you bring a kid into a bar on New Year’s Eve!’ ‘Get a babysitter!’ We even saw one of his teachers,’’ Michael said.
“Then he goes up on stage and plays, and all the people who were giving us the look previously were giving us the nod (as if to say), 'OK, I get it now. He’s part of the band.’’’
NOW HE'S GUEST OF HONOR at one of Rudy’s most popular events, Smiles for Miles.
The Hoyts hosted a second Smiles for Miles in 2019 to benefit the Lighthouse for the Blind of the Palm Beaches, a nonprofit support group that gave Miles his first blind cane and trained him how to use it.
The Lighthouse also introduces Miles to local children with vision impairments during camps and activities.
“Several kids he’s with are profoundly blind. So he kind of works as an assistant with those kids and it’s empowering for him,’’ Michael said.
For Miles, the July 25 fundraising show can't come soon enough.
It starts at 4 p.m. and will feature music, food, T shirts and raffled prizes.
Online donations can be made by clicking this link.
"I have told Miles since he was very young that we knew about his gifts before we knew about the challenges he would face,'' Renee said.
“Events like this are one way we can 'pay it forward' using his talents to raise awareness for Stargardt's Disease as well as to show how people with disabilities can go on to achieve anything they want as well."
© 2021 ByJoeCapozzi.com All rights reserved.
Sign up for a free subscription to ByJoeCapozzi.com
IN CASE YOU MISSED my last blog: Skunk Ape ‘Godfather’ Howling Mad over Bigfoot Conference Snub.
MUSIC FROM OTHER KEYBOARDS
David Remnick in the New Yorker: Buddy Guy is Keeping The Blues Alive.
Nabih Bulos in the Los Angeles Times: Afghan Musicians Dread Being Silenced Again by the Taliban.
Amanda Hess in the New York Times: Sinead O’Connor Remembers Things Differently.