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III FWB MEETING: THE BUTTERFLY GARDEN MISSION

/ / Blog, Jardim das Borboletas

Some choices we make during life are not choices at all, they are missions we have been entrusted with and from which we cannot turn our backs or close our eyes. Aline Teixeira da Silva known this very well from the day she met the first child with Epidermolysis Bullosa (EB). Natália, a four-year-old girl, suffered with the consequences of the disease until then unknown to Aline and the people of Bahia Backlands. The disease is a deficiency in the connective tissue of the skin. “The child does not produce collagen and does not accept replacement; the marrow comes with this deficiency in the gene. So, EB is a disease that leaves the skin loose”, explains Aline, who continues, “besides the skin being sensitive on the outside, people who suffer from EB have injuries on the inside making the whole digestive system deficient.”

Wanting to know Natália’s story, Aline, the Bahian from Caculé, dived deep into her heart’s calling and began her journey for improving the quality of life for these children. “When I started a fundraising campaign in her favor, many people started coming to me asking for help, and that’s when I founded Garden of Butterflies,” she says.

At the III Fraternity without Borders Meeting that is taking place this weekend at the Mineirão Stadium in Belo Horizonte/MG, she told us a little about her journey, making our hearts beat faster and we are grateful for having embraced this cause.

Today, the NGO serves 28 children and has a waiting list of 36. A proper dressing for the children costs an average of R$ 2500 and lasts only one day. “We live off donations. Normally we ask the government to pay for the children’s treatment; until get it, we pay the medical costs, and after we get it, we provide social assistance, building houses, improving the quality of life, and so on”, says Aline.

Epidermolysis Bullosa, when not treated properly, can lead to diseases such as cancer. “The lack of material, dressing, and knowledge causes many people who suffer from EB have a short and much more painful life,” explains Aline. For those who receive proper treatment, life expectancy is 50 years. Despite all the development of medicine, no cure has been found yet, and all treatment is to provide a better quality of life.

The Butterfly Garden project can now be sponsored on the Fraternity without Borders website. All the money raised from the sponsorships will be destined to the children’s treatment. For Aline, this new phase is full of hope. A hope of brighter and lighter days for these and all the children who are still waiting in line.

 

“The FWB gave us visibility and credibility in the eyes of everyone. Today we receive fixed monthly donations that came from the Fraternity, and this is very gratifying”, she explains.

When we asked her motivation to continue her work on behalf of people suffering from the disease, Aline moved us by saying that her strength is the gratitude of a child. “What keeps me going is the smile they give when they are hugged by the NGO. That’s what we want to show. The beauty that exists in a child with Epidermolysis Bullosa,” she says.

 

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