‘Butterfly Children’ Disease Causes This Boy’s Skin to Look Burned and Blistered
This rare condition has left him unable to walk or eat on his own.
One mother is going through the ultimate heartbreak after being accused of abusing her teen son, who suffers from a rare disease that makes his skin appear to have severe burns.
Marcos Jordan Burrola-Jaquez, an 18-year-old from Wichita, Kansas, suffers from recessive dystrophic epidermolysis bullosa, or EB, a rare genetic connective tissue disorder that causes skin to be so fragile that even minor friction can cause it to tear and blister. Children with this disease are referred to as “Butterfly Children,” because their skin is said to be as fragile as a butterfly’s wings.
His condition leaves his skin looking burned and blistered, which makes him unable to walk and causes excruciating pain. As a result, the teenager often has to miss days of school to cope with his condition. According to The Daily Mail, Marcos’s mother, Melissa Jaquez, has been accused of abuse multiple times because of the burn-like appearance of his skin.
“The public contacted the police who came knocking on my door accusing me of burning and abusing my children because of how they looked,” Jaquez told the outlet. “I was in total shock. It made me feel very alone. I just didn't understand why they would go out of their way to call the police instead of approaching us directly and offering support.”
Every day, Melissa has to change her son's bandages, feed him through a feeding tube, and give him medication to manage his pain.
EB is estimated to only occur in 6.5 per one million newborns in the US, according to the NIH. The condition causes the skin to be very fragile and to blister easily, even in response to the most minor injuries, like rubbing or scratching. The disease can lead to vision loss, disfigurement, and other life-threatening side effects.
According to the family’s GoFundMe page, Marcos’s family is looking to raise enough money for his mother to leave her full-time job to care for her son around the clock. Despite his heartbreaking condition, Marcos is reportedly grateful for all of the help he receives and has a positive outlook on his life.
“Mostly he's a very joyful person who treats every day as if it's a blessing,” Melissa told The Daily Mail.
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