“I know I might have all this stuff on me […] but I’m still a normal kid," said 18-year-old Marky Jaquez.
An 18-year-old with what’s known as butterfly skin wants people to see him for the regular teen that he is, even if he may be the only person living in Kansas with his strain of the disease.
Marcos Jordan Burrola-Jaquez, also known as Marky the Rock to his friends and family, loves rocking out to AC/DC and hanging out with his friends and family.
“I like going out and I’m very social,” Marky told InsideEdition.com. “I know I might have all this stuff on me […] but I’m still a normal kid.”
Marky has a genetic condition called recessive dystrophic epidermolysis bullosa, a disease whose patients are often called butterfly children because their skin is extremely thin and frail, like a butterfly's wings.
One in 20,000 children have the disease in the United States, the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) reports, but Marky has sadly become the only person living in Kansas with the condition after the deaths of his younger brother.
Carlos Xavier Tharp-Jaquez, whose condition was worse than Marky's, was 14 years old when he died in 2013.
They have an older brother who does not have the condition.
Because Marky was born without a type of collagen that binds his skin, 90% of Marky’s skin is currently covered in bandages, and underneath the bandages there is no skin.
Marky has also never been able to walk or go to school. He gets through his day with constant help from his mom to change his bandages and strong medication to ease the pain.
“It’s difficult having a child that’s in constant pain and not being able to remedy the pain,” his mom Melissa Jaquez told InsideEdition.com. “The pain is never going to go away. When they wake up in the morning, there’s going to be pain that you can’t do anything about. You can bandage them, you can love on them but at the end of the day, as his mother, you know you can’t take that pain away.”
Marky and his mom agreed that their biggest hope is to make people aware of the disease, since the lack of knowledge about the condition has made going about their everyday life difficult at times.
Jaquez explained that she was out shopping with her two sons about 10 years ago when store employees called the police, believing her kids had been badly burned and abused.
“Once [the officer] saw what he was called for, he was really embarrassed,” Jaquez said. “It was hurtful that the automatic reaction for the public was to assume they were abused. They automatically assumed the worst and called the police.”
More recently, his mom said Marky was hospitalized and had a hard time getting the care he needed because the doctors and nurses didn’t have experience with the condition.
“The medical staff there has never had a child with his disease,” Jaquez said. “They couldn’t even provide me with the wound care for his wounds. My husband had to bring everything from the house the whole week we were there.”
Until there is a cure for Marky’s condition, he sayid he hopes the world will see past his blistered skin and bandages.
To support the family’s mounting hospital bills, visit their GoFundMe page.
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