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 a rare genetic connective tissue disorder that causes her skin to blister and tear during everyday activities “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.” The incurable 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 Because of this fragility, comparable to the frailty of the wings of a butterfly, young patients with EB are commonly called “Butterfly Children ” : 7-Year-Old California Boy Lives with Incurable Rare Condition that Makes Sunlight Deadly “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 that more than 200 children are born with the condition a year, and it 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 still been able to enjoy much of her childhood But Destiny’s condition has recently worsened and trips to the hospital are becoming more frequent for the home-schooled sixth grader “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 discomfort that fills her days, Destiny has set out to document her life over the last two years, from stays in the hospital to days spent lounging in the pool like a typical pre-teen, in the hopes she can show others that those with EB can also find happiness “We research into others who have EB on social media, and when we started searching, all we saw were kids crying and always in pain,” Diane says “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 children who share her condition Her many YouTube videos have received thousands of views in total, and many well-wishers have left encouraging messages on dozens of her pictures on Instagram : Piano-Playing Mom Sings Sweet Song to 1-Year-Old Son with Rare Terminal Illness While Destiny’s parents were initially apprehensive about their daughter opening up on social media, they hope other people with rare conditions become inspired to share their stories, too Doing so, they say, may help others in similar situations feel like 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 at first and hide them from the world. Now we’re like, ‘Why?’ Let’s show people that EB exists ‘”