Girl, 12, Is 'Constantly in Pain' Due to Rare Disease That Causes Her Skin to Rip and Blister
Destiny Fuentes posts videos to her YouTube and Instagram to raise awareness about her condition
Pain and discomfort have filled much of her life, but 12-year-old Destiny Fuentes is setting out to show others there’s more to her than what meets the eye.
Shortly after birth, Destiny was diagnosed with an incurable tissue disorder that causes her skin to blister and tear during everyday activities such as walking or running. The condition, called epidermolysis bullosa, is characterized by patients missing the type VII collagen protein, which helps to connect the top layer of skin to the layers underneath, according to the Dystrophic Epidermolysis Bullosa Research Association of America.
“When she was born, I just remember her legs being a different color, like raw flesh, like straight red meat,” her father, David Fuentes, tells PEOPLE. “We were all confused. We thought she had peeled her skin off.”
Because of the skin’s fragility, which can be compared to the wings of a butterfly, young patients with the condition are commonly called, “Butterfly Children.”
“She suffers a lot. She’s constantly in pain. She doesn’t remember a time without pain. Every day, all day and night, she’s with pain,” Destiny’s mother, Diane Fuentes, says. “She gets pain medication, but she says it’s not really helping her. It doesn’t really take her pain away. And there is itching. Itching is one of the biggest concerns because she opens up her wounds and skin even more.”
DEBRA — one of the leading EB research groups in the country — says more than 200 children are born with EB a year, and the condition can cause the deaths of many of them before they reach the age of 30. Because the disease has no treatment or cure, patients can only hope to quell their pain by applying daily wound care and placing protective bandaging on their bodies to prevent infection. This is what Destiny has experienced ever since her diagnosis as an infant.
Thanks to the support of her family — who, every day, help to wrap the almost entirety of her body in bandages — Destiny has been able to enjoy much of her childhood, her parents say. But Destiny’s health has worsened recently and trips to the hospital are becoming more frequent.
“She uses her wheelchair more now. She can walk but it hurts,” Diane says. “Right now, she has blisters on her leg. We popped some already, but she says it still hurts. Even putting her shoes on hurts, like right now she doesn’t have shoes — she’s just wearing her socks.”
Despite the pain she feels, the home-schooled sixth grader is setting out to document her life, from stays in the hospital to days lounging in the pool like any typical pre-teen, in the hopes she can show others that those with EB can also find happiness.
“It started when we researched others who have EB on social media, and all we saw were kids crying and always in pain,” Diane says of what inspired her daughter to share her life. “Destiny wanted to show positivity while spreading awareness because she knew that EB is not something like cancer or diabetes that everyone knows about it.”
Through her social channels, Destiny has shared everything from inspiring messages, adventures with her family and hangouts with other kids who share her condition.
While Destiny’s parents admit they were apprehensive about seeing their daughter take to social media (no one else in the family have their own accounts, they say), but they now hope others with rare conditions will be inspired to share their stories, too. Doing so may help patients in similar situations realize they’re not alone.
“Don’t be shy to show your kid or spread awareness, because we were those parents who kept everything to ourselves,” Diane says. “We first tried to cover her bandages and hide them from the world. Now we’re like, ‘Why?’ Let’s show people that EB exists.”