At age one, Samantha Jade Duran was neither crawling nor walking. Deciding it was time to get her checked out, her father packed up the family home in the Hammocks and headed for Venezuela, where he knew an orthopedic pediatrician. “My parents were like, what’s going on?” recalls Duran.
The doctor diagnosed her with cartilage-based bone tumors, a condition called multiple enchondromatosis, more commonly known as Ollier’s disease. Her father wasn’t satisfied with the diagnosis, so he again packed the family’s bags and trekked back to the U.S.
Back in Miami came a second diagnosis.
Both, it turns out, were wrong.
“The [second] misdiagnosis was honestly dangerous,” she said. “Not only is my condition different, but I have an extraordinarily high chance of developing malignant cancer, and I require constant supervision.”
Finally at age 18, after years of being treated for the incorrect disability, Samantha was diagnosed with Maffucci syndrome, a rare disorder that causes enchondromas, or benign overgrowths of cartilage in her bones. Hemangiomas—benign vein tumors—are also common. The symptoms often manifest in her hands and feet, which means she suffers excruciating pain when she walks.
Maffucci syndrome falls under “extremely rare,” and doesn’t show up in most medical curricula, according to raredisease.org. Since the late 1800s, fewer than 200 people around the world have been diagnosed.
Today, Duran is an advocate and self-proclaimed disabled icon and fashion influencer more than 40,000 followers on Instagram that offer a unique take on what folks can wear.
Born in Miami to Venezuelan parents she has one older brother. Her father is a businessman, and from an early age her mom took care of her, made her appointments, fed her, and took her to the doctor.
At three years old, Samantha attended a pre-school for children with disabilities. She walked with an obvious limp due to the fact that her left leg is significantly longer than her right.
She felt accepted at that school, but later attended a public elementary in Kendall, Christina M. Eve Elementary.
This was when her classmates noticed her leg deformities and began to bully her. “They would say, ‘Ew, what is that’ or ‘What’s wrong with you’ and call me disgusting,” said Duran. “They would say really mean things like that about my disability and I’d tell them: What do you mean? There’s nothing wrong with me.”
She recounts that after one classmate bullied her. She was fed up with it, and eventually told her teacher about it.
“My teacher said that he bullied me because he had scoliosis and wore a back brace and was insecure about it,” said Duran. “‘Unlike you, you’re confident. That’s why he bullies and picks on you,’ my teacher told me. This was a really insightful moment for me.”
Samantha had a weird relationship with her disability growing up. “How does my condition make my humanity different from everyone else’s?” she said. “I always knew that growing up, and my mother instilled that in me.”
The first of three surgeries came when Samantha was six years old. A doctor aimed to install an external fixator on her right leg. The device consists of a metal frame that holds the bone in place while pins go through the skin into the bone. Then the bars on the outside are gradually turned to realign and lengthen the bone. She remembers it as a very uncomfortable experience.
She was out of school for half the year. The other half she spent at home healing, continuing her studies through a state program called “Homebound.”
When she was in middle school, she had to get another external fixator. Samantha’s peers began to exclude her once they realized she couldn’t walk.
“I remember when I would go out during this time, parents and children would stare at me horrified,” Duran said. “Like, jaws dropped, and parents would cover their children’s eyes and walk in the other direction.”
By the time high school came around, Sam was doing well. She hadn’t had any surgeries for four years. However, her last major surgery came when she was a 15-year-old freshman at Felix Varela. After her external fixator was removed, she underwent plastic reconstructive surgery to diminish the visibility of her scars.
The night before Samantha’s reconstructive surgery in 2013, her mother admitted herself into the E.R. for a serious cough. Her mother had been a lifelong smoker. Samantha and her older brother begged her to quit. She tried twice, but with no success.
Her mother was then diagnosed with an aggressive form of lung cancer.
“The surgery I had the following morning was really invasive and I couldn’t walk–I couldn’t do anything,” Duran said. “So, while I was recovering for two weeks, I couldn’t go visit my mom who was in the hospital.”
Samantha’s dad finally took her to visit her mother.
“No one had spoken about her diagnosis. But I always suspected it,” said Duran. “I went into her room in my wheelchair, and I was just talking to her like it was all good. I was a teenager, so I liked to experiment with my hair. So, I said to her: ‘Hey mom, I want to shave my head bald,’ and then she said: ‘Me too.’ Which was a shock because I think we all know that Hispanic women are really attached to their long hair. So, it was at that moment I knew what she was trying to say.”
Her mom passed away less than a year later.
At that point, her father became both the “care-giver and bread-winner,” she said, making her even more independent in a world that doesn’t understand her circumstances.
Samantha spent time grieving her mother’s death and not attending doctor’s appointments, eventually deciding to go back to see her orthopedic doctor when her lower left leg—her “good leg” as she called it—began to hurt. It wasn’t until she turned 18, four years after her last appointment, that she was finally correctly diagnosed with Maffucci syndrome.
Samantha makes clear how inaccessible the world is to some people. She recounts numerous experiences where the difficulty getting around due to lack of accessibility is the central theme.
Along with discussions of medicinal books she’d studied to help understand what was wrong with her, she likes to speak about disability rights and activism. Samantha has involved herself in her local government by, among other things, taking part in City of Coral Gables’ Advisory Board on Disability Affairs in June 2021. She is also a committeewoman and is the Disability Working group chair of the Miami-Dade Dems where she oversees disability-related policy change.
Despite moving around in a wheelchair and dealing with chronic pain, she frequently attends political rallies that support the causes she believes in. At an event hosted by the Miami-Dade Dems in Wynwood, she met Miami Mayor Daniella Levine Cava.
“Even the Mayor knows me by name,” she says, referring to Cava. She aims to use her platforms on Tik Tok and Instagram—where her reach has doubled this year—to spread awareness and continue promoting her bright personality and fashionista views.
Samantha has an unbreakable bond with her older brother, Bryan. “I admire her for being so passionate about what she believes in and her determination to be the change she wants to see in the world,” he said. In an act of love and solidarity, he got a tattoo of a heart-shaped scar Samantha has on the exact same spot earlier this year.
“If I met a child with the same disability as mine, I would tell them that it’s going to be okay, but you need to have a strong relationship with yourself and your disability and come to terms with it,” said Duran. “It’s so important to accept your identity. Many people say that you are not your disability, but I disagree. This is something that has influenced every aspect of my life and has propelled me into the direction and woman I currently am.”