After losing son to rare disease, woman creates project to help mothers with children with special needs

Linda Franco, an administrative assistant from Curitiba (Brazil), and her son, Gabriel, had a normal life until he was six years old. Then, in 2009 Gabriel was diagnosed with a rare genetic disease, known as adrenoleukodystrophy (ALD). They lived in the hospital for three years, and it was there that Linda, witnessing the situation of other mothers, had the idea for the group.

Linda, moved by the strength her son had during more than eight years of fighting the medical condition, decided to start a project, called "Troca-Troca Entre Mães Especiais". The goal was to unite mothers who faced similar difficulties with their children and, thus, were able to exchange medical supplies, wheelchairs, medicines, equipment and, also, experiences. The Facebook group was created in 2013 with few participants, but currently has more than 10 thousand members, who carry out exchanges frequently. The group has even crossed borders, as it receives donations from outside Brazil and sends them internationally too.

Now social mobilizer and adrenoleukodystrophy activist, Linda gives free talks in universities to tell her story and raise awareness about the rare disease. She considers that friends and the other volunteers are vital to run the project successfully, as they help reach more mothers in need. The project can be summarized by Linda’s own words: “what we do is unite to fight and it's worth it”.

Facebook group: https://www.facebook.com/groups/trocatrocaentremaesespeciais

This story was adapted from: https://g1.globo.com/pr/parana/noticia/2022/05/08/apos-perder-filho-por-.... The images were taken from the same article.