The Butterfly Family Fund

About The Butterfly Family Fund

At The Butterfly Family Fund, we are dedicated to supporting caregivers and families living with Epidermolysis Bullosa, while empowering and inspiring a life of wellness. We provide resources, education, and community to help navigate life with EB through positivity, resilience, hope, connection and compassion. Our mission is to create a nurturing space where caregivers avoid burnout and families thrive. We hope to help navigate the delicate world of EB where both caregivers and their families can not only find balance and wellness, but also experience as much joy this world can offer. Epidermolysis Bullosa is often referred to as "the worst disease you never heard of." With EB, any kind of bumping or friction, causes the skin to blister or shear off. This not only impacts the skin, but organs including the esophagus, mouth, eyes, trachea, and stomach. Something as simple as eating causes excruciating pain, often leading to the inability of enjoying the simple life pleasure of eating a meal. This is one, of many life pleasures that are ripped away from someone living with EB. Parents often learn about EB the day their child is born. Then and there, EB becomes their life. Children living with EB are often referred to as butterfly children because their skin is as fragile as butterfly wings. Although those living with EB may appear fragile, they are by far the strongest, most resilient, courageous, beautiful souls you will ever meet. We are honored to know them and honored to be part of their journey.

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