Some choices we make during our lives are not really choices, they are missions entrusted to us and we cannot turn our backs or close our eyes. Aline Teixeira da Silva knows this very well since the day she met the first child with Epidermolysis Bullosa (EB). Natalia, a four-year-old girl, suffered from the consequences of the disease unknown to Aline and the people of the backlands of Bahia. 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,” beyond the skin being sensitive on the outside, people who suffer from EB have bruises from the inside making the whole digestive system not work properly. “
When she wanted to know the history of Natalia, she plunged deep into the call of her heart and began her journey to improve the life quality of these children. “When I started a fundraising campaign on her behalf, a lot of people started looking for help and that’s when I founded the Butterfly Garden,” 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 bit about her journey, making our hearts a beat stronger and grateful for having embraced this cause.
Today, the NGO serves 28 children and has a waiting queue of 36. A proper dressing for children costs on average R $ 2500 and lasts for only one day. “We live from donations. We usually ask the government to take care of the children until we can afford it, then we can get in with the welfare, build houses, improve 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 and knowledge makes many people suffering from EB have a short and much more painful life,” explains Aline. For those who receive the appropriate treatment, the life expectancy is 50 years. Despite all the medicine development, no cure has yet been found and all treatments have the finality to provide a better quality of life.
The Garden of Butterflies project can now be sponsored within the website of the Fraternity without Borders. All the funds raised by the sponsors will be aimed at the treatment of children. For Aline, this new phase is hopeful. A hope for more flowery and light days for these and all the children who are still waiting in line.
“The FWB gave us visibility and credibility to everyone. Today we receive fixed monthly donations that came from the Fraternity and this is very gratifying, “she explains.
Asked about her motivation to continue her work on behalf of people suffering from the disease, Aline thrilled us by saying that her strength is the gratitude of a child. “What keeps me going is the smile they give when they are embraced by the NGO. This is what we want to show. The beauty that exists in a child with Epidermolysis Bullosa”.
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