The children of the Amor Divino family, (left to right) Dhones, Izabely and Samille all suffer from Pelizaeus-Merzbacher, a rare genetic nervous disorder that affects coordination and intellect.
“The scene struck me as both beautiful and sad.”
Deep inside the massive favela Brasilandia, one of the biggest of Sao Paulo’s wretched slums, lives Rose with her husband Ivo and their three disabled children.
On my first trip to met the family 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 before phoning them for help. With their directions, I finally reached the top of a steep alley, and found myself inside a “boca de fumo,” basically 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.”
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 mould. 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.
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 - a special therapy centre for children with disabilities.
Once in Sao Paulo, Rose requested help from the INSS social security system, and after three years of waiting they were granted just 622 reais ($332) per month for one of the three kids. The INSS determined that Ivo’s job could maintain the other two. Ivo works in a bakery 12 hours a day, six days a week, and earns 680 reais a month, just over $350 at today’s exchange rate.
When I commented to Rose that she should keep requesting help from the INSS, she responded, “I felt humiliated there. I can’t go back.” What she did obtain was help from Sao Paulo city hall in the form of transportation to AACD. The van that picked us up at the top of their alley began to arrive a year after she put in the request.
I accompanied Rose and her children to their therapy sessions at the clinic, where she had befriended other mothers of disabled children. One of them I remember clearly because of something she told me: “When I met Rose and her children I finally had a reason to stop crying. She has three disabled children and I have just one. It wasn’t right for me to be so sad when I compared my situation with Rose’s.”
When we first met Rosa asked me to guess her surname and that of her children. I didn’t have a clue, so she told me. “Amor Divino," she said, "translated as Divine Love." I looked at her smiling, but speechless.