THE REALITY
Epidermolysis Bullosa is a genetic, non-contagious condition in which the skin is extremely fragile and frequently blisters all over the children's bodies due to rubbing, scratching and using tape to cover existing wounds on the skin or even exposure to heat. In severe cases, it can also affect the mucous membranes of the mouth, throat, and digestive tract. Children born with EB are often called "Butterfly Children" because their skin seems as fragile as a butterfly's wing. Since EB has no cure, the treatment focuses on relieving pain, wound care, and reducing the risk of complications. Due to the frailty of the affected skin, a special silicone dressing is required to protect the blisters and promote wound healing. The reality in Brazil today is that the government only covers a few aspects of EB treatment, making it impossible for low-income families to afford proper treatment for their children.
OUR MISSION
Since 2019, Fraternity Without Borders – Canada has included in its mission supporting Garden of Butterflies by helping to provide the much-needed appropriate silicone dressings to impoverished children with EB in Brazil, which will give them a chance for a better life. When Aline, the founder of Garden of Butterflies – Brazil, was asked what motivates her to keep going with her mission, she answered, "It is the smile that each child gives when the project embraces them. That is what we want to show —The beauty in each child with EB"; Together we can provide a life full of care, smiles, love and hope for our Butterflies. A hundred percent of the money received through sponsorship to the Project Garden of Butterflies will be used to supply the dressings to those in need. Become a sponsor and be part of this movement of love.
OUR HISTORY
Jardim das Borboletas (Garden of Butterflies) is a non-profit organization that started in 2016 when Aline Teixeira, a hairdresser from a little town called Caculé in the arid lands of the state of Bahia in Brazil, heard about the story of Natalia, a four-year-old child with Epidermolysis Bullosa (EB). EB is a rare genetic condition that makes the skin so fragile that it will tear or blister at the slightest touch. Aline then started a campaign to raise money to pay for Natalia's much-needed and expensive treatment. However, during that campaign, she began to receive messages from other families asking for help. At that moment, Aline felt the call to assist other children with EB. So, in 2017 "Jardim das Borboletas"; was officially born. In 2018, when Fraternity Without Borders – Brazil embraced this project, 12 children were assisted by Jardim das Borboletas. Today we have over 100 children in more than 20 states of Brazil being helped with dressing supplies, medication, nursing care, ostomy technicians, psychological care, doctor's appointment, and better living conditions. It is estimated that there are about 1,600 people diagnosed with EB in Brazil. The average cost for the dressings alone is around 9,000 and 11,000 CAD a month, and most people with EB have no resources to treat the disease.
