By Nacho Doce
Deep inside the massive favela called Brasilandia, one of the biggest of Sao Paulo’s wretched slums, lives Rose with her husband Ivo and their three disabled children. I first learned of Rose’s predicament while doing a feature story about the AACD clinic for disabled children. I immediately arranged for us to meet for the first time in their slum at 5 am, the time they leave for a weekly session of physical therapy.
Their alley didn’t appear on my taxi’s GPS, and we got lost in the dark maze. I had to wait for a more decent hour closer to 5 am before phoning them for help. With their directions, I finally reached the top of a steep alley, and found myself practically inside a “boca de fumo,” best described as an open air crack den. It wasn’t until Ivo quickly rushed to meet me and spoke to one of the addicts, that I heard the words, “Taxi free to pass.” I was relieved.
We hiked downhill through two steep alleys to reach their house. In the living room, their three mute children, Samille, 9, Dhones, 7, and Izabely, 6, were sitting in a row on a red felt-covered sofa, in front of a wall covered with green and brown mold. The scene struck me as both sad and beautiful.
All three kids suffer from a disease called Pelizaeus-Merzbacher, or PMD, a rare genetic nervous disorder which affects coordination and intellect. I asked myself the logical question of how a mother could continue to have children with such a serious health condition. Samille, Dhones and Izabely all were diagnosed with the disease at an early age.
As soon as I arrived at the house, it was time to take the kids to the clinic. Ivo quickly began the arduous ritual of lugging the wheelchairs, one by one, back up the alleys to the street at the very top. He made three trips, and then returned again to carry two of the kids while Rose carried the third. A specially-equipped van arrived as the sky lightened, and we all got in and headed off on the long ride to AACD.