Living with Epidermolysis Bullosa (EB): A Constant Battle

Epidermolysis Bullosa (EB) is a relentless condition that significantly impacts individuals and their families. Unlike burns, EB wounds never truly heal, creating ongoing challenges. Everyday activities like riding a bike, walking, or playing sports become painful and difficult due to chronic blistering.

In some cases, the mouth and esophagus are also affected by blisters and scarring, making eating a painful experience.

Children with EB usually spend a substantial amount of time in hospitals for wound treatment, blood transfusions, biopsies, and surgeries. Their life expectancy is often limited, with few living beyond 30 years.

These individuals are sometimes called “Butterfly Children” due to their skin’s fragility, akin to a butterfly’s wings. This term underscores their vulnerability and the need for extensive care and support.

We are a passionate and caring Brazilian women-owned company dedicated to beauty and wellness. Our mission goes beyond our products and services; it extends to making a positive impact on the lives of those in need.

Our hearts are moved by this rare and painful disease affecting children. We believe in relieving their suffering and improving their lives.

We’re supporting an organization led by a fellow Brazilian, Marcia Soares, but it can only help 12 children due to high treatment costs. These children require specialized care, including bandages, creams, and therapies, which can be financially overwhelming for the institution.

This organization is called HopEButterfly, a non profit organization located in Danbury, CT.

We’re committed to raising awareness and funds to provide essential treatments, bringing comfort and hope to these brave children.

Join us in making a difference in their lives.

Learn More about Marcia Soares and HopEButterfly.

HOW TO HELP

Please donate to Marcia Soares:
Venmo: marcia-soares-3
Zelle: 2038983143
PIX (In Brazil): 05324796883 Marcia