A childhood full of dreams.
Children born with EB are often called “Butterfly Children” because their skin seems as fragile as a butterfly’s wing.
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 the much-needed and expensive treatment for Natalia. However, during that campaign she started to receive messages from other families asking for help. At that moment Aline felt in her heart the call to assist other children with EB. So in 2017 “Jardim das Borboletas” (Garden of Butterflies) was officially born.
In 2018, when Fraternity Without Borders embraced this project, there were 12 children being assisted by Garden of Butterflies. Today we have 67 children in 15 states of Brazil being assisted with dressing supplies, medication, nursing care, ostomy technicians, psychological care, doctor’s appointment, and better living conditions.
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, the use of tape to cover existing wounds on 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, special silicone dressing is required to protect the blisters and promote wound healing. The reality in Brazil today is that the government does not normally cover many aspects of EB treatment such as dressings and medication. A box of four 20 x 50cm silicone dressing costs around Ca$175 dollars here in Canada while in Brazil the same box will cost around Ca$570. Considering that a child needs at least one box of dressings a day the total cost of dressings for just one child can raise to over Ca$17,000/month, making it impossible for low income families to afford proper treatment for their children.
Strength & Resilience
Little butterfly with her cottoncandy
One more butterfly on our garden
Perseverance since a very young age
Children being children
Arts & Crafts
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 EB children in Brazil which will give them a chance for a better life.
When Aline, the founder of Garden of Butterflies, was asked about what motivates her to keep going with her mission, her answer was, “It is the smile that each child gives when they are embraced by the project. That is what we want to show —The beauty that exists in each child with EB.”
Together we can provide a life full of care, smiles, love and hope for our Butterflies.
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