Butterfly Skin Disorder
It all begins with an idea.
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Every Child Deserves a Life Without Pain
When Bryan’s story appeared on my Facebook feed in 2015, I immediately decided to help. I was just a young girl in high school, but he was even younger—too young to understand why he was in pain.
At only 2 years old, Bryan was already battling stage 2 Epidermolysis Bullosa. He lived in a small home with his mother and two siblings, sharing a single mattress. Among his siblings—a girl older than him and a younger boy—Bryan was the only one with EB.
It was heartbreaking to witness the disparity in treatment between Bryan and his siblings. Unlike them, Bryan couldn't eat without pain, pass food without discomfort, or be hugged without agony. He disliked baths but couldn't tolerate dirty bandages either. Even the simple act of changing his diaper caused him immense pain. Bryan was just a baby, suffering without understanding why.
At 15, I was attending school and saving leftovers to eat at home, but I didn't have a health condition holding me back. I had at least a decent chance of escaping the circumstances I grew up in. Bryan's mom, however, lived with the constant fear that he might not make it past 7.
Witnessing Bryan’s condition was not just an eye-opener for me; it was an opportunity to raise awareness about his struggle and to fundraise for his needs. Years later, the memories of meeting him and his family are still deeply ingrained in my mind. At the time, I managed to raise funds through my high school in Texas. Although we both lived in Tamaulipas, Mexico, I crossed the border every day to attend school in Texas. When one of my college courses required us to develop a fundraising plan for a cause of our choice, I chose Butterfly Skin Disorder—Epidermolysis Bullosa.
What has stayed with me all these years is not just the limitations of the disease, but how his mother had to adapt her love to care for him.