At 16, Mikey Álvarez knows some things are harder for him than for other teenagers. He lives with the effects of a rare genetic condition: he is blind in his right eye and has limited vision in his left.
His bone structure has also been affected, and his life since birth has been defined by hospitals, surgeries, therapies and questions that went unanswered for years.
But when he arrives for his shift at the Culver’s on Boyette Road in Riverview, Mikey seems to leave all that behind.
He gets to work — carrying trays to the kitchen, cleaning, clearing tables, restocking condiments, and keeping the place tidy. Yet, there is one task he seems to enjoy most: greeting customers.
“I’m working hard right now and getting a little tired,” he says with a laugh, “but I’m happy because I get to learn from new experiences,” he told CENTRO Tampa.
In August, he received news that filled him with pride: he was named Employee of the Month. His coworkers and customers recognized his hard work, enthusiasm and constant willingness to help. Some offer advice, others congratulate him, and some even leave him a tip. Mikey smiles when he talks about it.
For him, working isn’t just about clocking in and out. It’s an opportunity to prove he can do things on his own, connect with others, and conquer spaces that once seemed out of reach.
“We have to keep living life,” he says. That is his message.
A childhood full of questions
The story began long before Mikey could speak those words. When he was born in Puerto Rico, his mother, Elsie Contreras Caraballo, thought the difficulties he faced were minor. He had an extra finger on one hand and some webbed toes. It was nothing serious, or so she was initially told, but this seemed to foreshadow the battle that lay ahead.
At around 1 month of age, the seizures began; his eyes would roll back, and at times he would become unresponsive. The search for answers was just beginning.
Then came a hemorrhage in his right eye; doctors determined there was a serious problem and he underwent surgery, yet the specialized equipment he needed was not available in Puerto Rico. Mikey lost vision in that eye.
New difficulties soon emerged. He wasn’t crawling, he had trouble feeding, and his motor development wasn’t progressing as expected. Tests piled up, yet answers remained elusive.
Elsie remembers those years as a constant race against time. In 2011, when Mikey was 1 year old, the family was shaken by more news: the retina in his left eye was also detaching.
That was when she made a decision that would change the course of both their lives: moving to the United States.
Thanks to an emergency job transfer from her employer, Elsie arrived in Miami with her son, and he began receiving care at the Bascom Palmer Eye Institute.
But the illness had not yet fully revealed itself. Mikey could not feed properly, was not gaining weight, and was not walking. Amidst the medical evaluations, another diagnosis emerged: developmental delay.
His stomach was severely affected, requiring the placement of a gastrostomy tube for feeding. Months went by, and Mikey still wasn’t growing like other children.
Elsie worked when she could and cared for her son, when necessary, often having to choose between the two — until even harder times arrived.
There were prolonged hospital stays, months without work, struggles to pay for basic utilities, the loss of their home, and days when there wasn’t even enough food.
“I experienced what it’s like to be evicted, to have no electricity or water, to go without a meal because I was caring for him,” she recalls. Yet, she never stopped searching for answers.
The name that finally explained years of uncertainty
In 2019, Elsie and Mikey settled in Riverview. A year later, during the pandemic, a clue emerged that could explain the story they had been living through for years: SMOC1 syndrome.
After multiple tests and four diagnoses that had failed to fully explain Mikey’s condition, genetic testing conducted with specialists from the University of South Florida confirmed a mutation linked to the SMOC1 gene, which is associated with ophthalmo-acromelic syndrome.
For the first time, the family had a name for what had marked the boy’s life. But the diagnosis also brought a new uncertainty.
There wasn’t enough medical information to know for sure how Mikey’s condition would progress. Elsie notes that, up to that point, known cases were extremely rare, and specialists lacked sufficient background data to predict what the future held.
“Up until 2020, there had been only 37 cases in the entire history of medicine in the United States — that is, one in a million patients.”
There was no pre-written answer, and perhaps that is why Elsie decided to start writing it herself.
Turning pain into a guide for other parents
Elsie created a Facebook page, Mikey’s SMOC1 Journey: Awareness, Resources & Hope, with the aim of finding other families, sharing information, and building a support network.
She also wrote a book: “Mikey: A Story of Love, Faith, and Truth.” She didn’t write it solely to tell her own story; she wrote it with the mother or father in mind who might one day receive an unfamiliar diagnosis and be left facing a list of unanswered questions.
“My goal is to be able to help and open doors for other children,” she explains. Her experience taught her that seeking help doesn’t mean simply accepting the first diagnosis or answer you receive. It means asking questions, researching, persisting, and learning.
It also means working closely with people who understand the system. That is why she has turned to the Hillsborough County Department of Education and the University of South Florida, hoping Mikey’s experience can help train future professionals and deepen their understanding of children with rare conditions.
Elsie doesn’t expect doctors to have all the answers; she wants doctors and families to learn to listen to one another.
‘Don’t just go by what you’re told’
Gladys Caraballo, Mikey’s aunt, has witnessed much of this journey.
From the time he was a baby, Gladys and other family members helped care for him whenever Elsie had to work. She has seen the surgeries, the hospitalizations, and the hardships, but she has also watched the boy grow into a respectful, cheerful, and determined teenager. Her advice to other parents is straightforward: get informed, seek out available assistance, ask questions at schools, consult professionals, and learn about the laws and resources available for people with disabilities in Hillsborough County.
“And, above all, don’t stay silent. Parents need to be motivated to go out, search, and learn,” she maintains. Because often, the first barrier isn’t the disability itself—it’s not knowing which door to knock on.
An opportunity to prove what he can do
At Culver’s, Mikey found another open door. His placement is part of a partnership with Hands On Educational Services, a state- and federally-funded training program that introduces students with disabilities to the workforce and helps them build skills for permanent employment.
William Jett, the restaurant manager, speaks of Mikey as someone who is already part of the team.
He notes that Mikey asks questions, always wants to help, and has a big heart. But he has observed something else, too: “He shows independence, responsibility, and discipline; he even tells me he washes his own clothes at home now.”
For Jett, the job isn’t just about teaching Mikey to perform specific tasks within the restaurant; it’s also a way to prepare him for life.
“He needs to live in order to learn,” he asserts.
And Mikey is learning. He learns while cleaning a tray, clearing a table, organizing condiments, or simply chatting with a customer.
“Now he knows he can work, that he can contribute, and that he can be recognized for what he can do rather than what he can’t do.”
Living while the answers remain unknown
No one can tell Mikey exactly what will happen tomorrow. His mother doesn’t have that answer, either.
There is no clear prognosis to predict how his condition will evolve, what changes lie ahead, or what his future holds. But perhaps Mikey has already found an answer to a different question.
What should one do while waiting for the future? His answer: “Live, travel, dance, play, laugh, study, work, and keep learning.”
Mikey sees the world differently. He often must hold objects close to his face to see them clearly. Even so, that has not lessened his curiosity or his desire to take part in the world around him.
At 16, while other young people are just beginning to imagine what they want to do with their lives, Mikey is already building a part of his own.
He does use the tools at his disposal, with the support of his mother and a family that has stood by him, and with the help of teachers at Riverview High School, as well as specialists and programs that have opened doors for him.
Also, with coworkers who, according to his manager, welcome him every day as part of the family.
Mikey doesn’t know how long he will live or how his condition will progress, but he is clear about how he wants to live his life: with a smile, with work, and with independence. And best of all, without asking his disability for permission to be happy.
His message needs little explanation: “Be yourselves.” Because some life stories aren’t written with the certainty of knowing what tomorrow holds; they are written with the courage to get up and face today.
And Mikey, at just 16 years old, is already teaching a lesson that transcends his own diagnosis: hope doesn’t always mean knowing everything will be fine; sometimes it means deciding that, even without knowing what lies ahead, it is worth moving forward.
“Hello everyone. I’m Mikey Álvarez, and I’m here to tell you that even if we have disabilities, syndromes, or whatever else — and even if it might be uncomfortable — we must keep living life. Don’t get depressed or anything like that; just be yourselves.”