The mother of Kai, 16, and Soline, 26, has become an activist for people with rare and invisible diseases. With the support of her husband, Roberto Marcio de Macedo Fraga Jr., she founded Cia Teatro Raro, with the aim of making visible the issues that concern the public who face the same challenges as her. VivaBem tells her story:
“I was 10 years old when one of my cousins pushed me off the swing. With severe back pain, I was taken to the doctor who discovered a severe case of scoliosis. My parents didn’t notice. The doctor ordered a brace to reverse the swing. I managed to avoid surgery but was bullied a lot and stopped using it after about a year.
I didn't want to be looked at differently. At dances, I always ended up dancing with a broom. So I used my communication power. At school, I turned book summaries into theatrical scenes. I won the boys' favor because my scoliosis became more visible. And so I discovered myself as an actress and studied theater at the age of fourteen.
When I took off the brace, the scoliosis had already progressed to 69 degrees. [a curvatura considerada normal vai até 10 graus]But the surgery was more dangerous at that time. I told my parents that I didn't want to do it. I avoided tight clothes and some dresses, because one side of my back was too high. I did swimming and played RPG, but my condition was surgical.
When I entered the theater, I rebelled. I pretended that scoliosis didn't exist, wore whatever I wanted, and let my hair grow long, thinking it would hide the problem. I made it to the end of several auditions, but I couldn't pass the costume test and knew the problem was my spine. At the age of 16, at a children's party, one of the contractors asked the person in charge of our group: “Did you bring the little twisted mermaid?”
Noticing my physical fitness being rejected, I socialized and went to work in the culture department. At the age of 26, I became pregnant. I wanted a natural birth without anesthesia, but my son sat up. I had to be anesthetized and they used forceps. I saw everything. A year after giving birth, I met my daughter in an orphanage.
