By Tom Midlane @goldenlatrine
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Videographer / director: Gerrit Messersmith
Producer: Tom Midlane, Ruby Coote
Editor: Ethan Edwards
Elio Figueredo, 13, of Tampa, Florida, was born with a as yet undiagnosed congenital complaint, believed to be a form of ichythosis.
His condition means he makes new skin cells too quickly and loses the protective barrier that keeps moisture in his skin.
But whereas some types of the condition leave the skin cracked and scaly, 4ft 2in Elio’s skin slips off like a snake shedding its skin.
Elio’s mom Janet, an orthodontist assistant, said: “My pregnancy was actually awesome, he is my third child and everything was progressing fine with the sonograms and check-ups.
“We weren’t expecting him to have any type of condition, it was never detected – it was a surprise not just to me but also for the doctors.
“They put him in an incubator which was bad from his skin. They thought he had a yeast infection, then cystic fibrosis. Finally they found out that he needed to be in a humidifier.”
Elio’s condition earned him the nickname ‘Little Elmo’ from his family because it leaves his face and large parts of his body bright red.
Doctors told Janet that her son might not make it to his first birthday, even instructing her to make funeral arrangements in advance for her son.
Elio defied the negative prognosis, but spent the first three years of his life in a nursing home in order to get the specialist care he needed, before moving home with his mom and sisters.
However, Elio’s condition means he has to undergo an intensive regime to remove the excess skin that builds up on his body, including two bleach baths a week and lubricating his body every couple of hours.
“I have to take bleach baths because it cleans out my pores and it just keeps my skin clean,” Elio said.
Mom Janet added: “He gets up he then takes his bath for twenty to thirty minutes, where we scrub all his dead skin off, if he peeled it off he would bleed because it is attached to his skin.
“I used to bathe him and scrub him but since he’s got into his teenage years where he’s body is changing to that teenage stage he wants more of his privacy so he’s like ‘mom I got this, I don’t want you in the bathroom with me’.”
“Then we put his Vaseline on every two to three hours or sometimes more often, depending on how the weather is, if it’s hot he’ll dry out faster.
“We also place mineral oil on him to keep his body oiled and cream which doesn’t help because he can’t really go outside because the sun will burn him even more with the oil, so we always put long sleeves on him and a hat.”
Elio’s ichythosis gives him extraordinary powers of healing, with his mom calling him “a little superhero.”
Nancy Black, one of the nurses who looked after Elio in the early months of his life, said: “He doesn’t have layers of skin that we do, so when he falls down and he needs stitches, he’s actually healed in 24 hours.
“There’s not really any necessity to have stiches because his skin is always reproducing, so its really, really quick to regrow.”
Nevertheless Elio has faced cruel comments from passerby and other school children throughout his life.
He said: “Every single day of my life people make comments, but I don’t care anymore, I am at a point where it doesn’t matter if they say mean stuff, sticks and stones may break my bones but words don’t hurt me.
“I have been told to kill myself, I have told to just leave, I have been called ugly, I have been called tomato, a girl called me a disabled, kids have insulted my parents in front of my face, one person even got expelled. My sister Yania doesn’t like when kids mess with me, she hates it.”
Yania added: “He’s my little brother, he’s my baby. I’ve defended him and protected him and you know, he can be a little annoying, a little mean but what are little brothers for?”
As well as experiencing bullying, people have also called the police when seeing Elio out in public after assuming his redness was the result of abuse.
Janet said: “I had a situation where we tried going to the beach and it was evening hours and the sun was going down and we just decided we would have a little picnic and just enjoy and watch the sunset.
“The next thing we know we have fire fighters approaching us, then the cops came and started questioning me, asking if I burnt him, or wasn’t caring for him properly.
“Thank god that I had documentation with me that I am carrying in my car in my glove box and I had to show proof that he is disabled and it is a disability.
“Our whole evening was ruined. I encourage people that if you see something and are just curious, ask before you question us or call the authorities.”
Elio’s condition means he can only spend minimal time outdoors, especially in summer, but he’s passionate about food and dreams of one day becoming a chef.
Janet said: “He never watched cartoons growing up, his cartoons were the cooking channel. I’ll come home and he’ll have dinner ready.”
She added: “I would love for them to come up with a name and diagnose him with something definite, even if it’s one in a million. It’s hard when people ask and our answer is ‘we’re not sure.’”