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Rose's Divine Love - A mother's battle for her children's health

Nacho Doce / Reuters

The children of the Amor Divino family, (L-R) Dhones, Izabely and Samille, sit on their couch after their parents dressed them for a weekly physical therapy session, in the Brasilandia favela of Sao Paulo, before sunrise on March 23. All three children suffer from a disease called Pelizaeus-Merzbacher, a rare genetic nervous disorder which affects coordination and intellect. Brazil's social security system INSS granted the family monetary assistance only for one of the three children, leaving the others to depend on the income from their father's job in a bakery.

 

By Nacho Doce of Reuters:  (Sao Paulo, Brazil) 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.

Nacho Doce / Reuters

Rose Amor Divino pushes her children (front to back) Izabely, Dhones and Samille on a triple wheelchair as they arrive at the AACD clinic for a physical therapy session in Sao Paulo March 30. All three children suffer from a disease called Pelizaeus-Merzbacher, a rare genetic nervous disorder which affects coordination and intellect. Brazil's social security system INSS granted the family monetary assistance only for one of the three children, leaving the others to depend on the income from their father's job in a bakery.

Nacho Doce / Reuters

Samille, left, and Dhones Amor Divino, joke in their wheelchairs as they wait with their sister Izabely for the start of a session of physical therapy in the AACD clinic in Sao Paulo March 23. All three children suffer from a disease called Pelizaeus-Merzbacher, a rare genetic nervous disorder which affects coordination and intellect.

Nacho Doce / Reuters

Dhones do Amor Divino undergoes a session of physical therapy in the AACD clinic in Sao Paulo, Brazil on March 23.

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.

Rose and her family were living in the poor northeastern state of Bahia when they learned of AACD, the only free clinic of its type in Brazil. Ivo traveled to Sao Paulo first to find work and then bring the family, even though at that time they weren’t sure how the disease would affect each of their children.

Nacho Doce / Reuters

Rose Amor Divino carries her son Dhones home from school in the Brasilandia favela of Sao Paulo, April 24. Dhones and his two sisters suffer from a disease called Pelizaeus-Merzbacher, a rare genetic nervous disorder which affects coordination and intellect. Brazil's social security system INSS granted the family monetary assistance only for one of the three children, leaving the others to depend on the income from their father's job in a bakery.

Nacho Doce / Reuters

Rose Amor Divino gives medicine to her son Dhones at home in the Brasilandia favela of Sao Paulo, April 24.

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. 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 AACP. The van that picked us up at the top of their alley began to arrive a year after she put in the request.

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