Name: Gabriel Queiroz PereiraAge: 14
Where do you call home? The interior of the state of São Paulo, Brazil.
What is your education? First year of high school.
What is your favorite subject at school? History
What do you want to do when you grow up? Screenwriter/writer
With whom do you live? I live with my mother, stepfather, and 7-year-old sister.
What is a typical day for you? I study in the morning from 7 am to 12:30 pm. I get home and have lunch with my family. I go back to school at 2 pm two days a week, and on the other three afternoons I have therapy activities to fight FA. At night I play video games. On weekends I like to write stories.
How long have you known you are living with FA? Since I was little, I have had difficulty running and writing, but it got much worse after I turned 8 years old. At the age of 11, I could only walk with support, and I was very tired. The actual diagnosis came when I turned 12. It took eight years to get the diagnosis.
Is there anyone else with FA in your family? I am the only one with FA in my family.
Do you have any special hobbies or interests? To write scripts and play video games.Name: Fernanda Cenci Queiroz
Relationship with FA patient: Mother
What quality or characteristic was most highlighted in Gabriel despite living with FA? A great quality of his is his good humor. He always uses irony to have fun and amuse those around him. He is very intelligent, and he creates incredible games and stories.
What did you think was the best way to discuss the diagnosis with Gabriel? As my son was still a child, it was necessary to discuss the diagnosis with a support network to know the best way to explain it to him. It was harder to tell my family than it was to tell him. We explained as he asked us. We never lie to him. In the most difficult moments, I respected his pain and told him that he would never be alone, and that we would fight together. And that's how we do it.
How has he inspired your life? My son inspires me every day. He has an ability to be resilient that I greatly admire. He has his moments of sadness, pain, but they don't last long. Sometimes I'm super worried about a problem he's facing, but when I see it he's already found a way to live with it. Normally he uses humor and irony to overcome adversity. He doesn't like to see anyone sad. When he notices someone down, he starts laughing, telling a funny story.
How have you been encouraged for him to live a future life with FA? When the diagnosis came, I closed myself in a bubble. I didn't want to leave it or take him out of his comfort zone. On the contrary, I wanted to provide more comfort. That year, my family and I asked the school to work solely on his socialization. We didn't want to bring any kind of pressure or suffering. The understanding that ataxia is present, but he remains the same Gabriel he always was, took a long time to come. It was living with other people who lived the same things as us that taught us. Particularly Janaina – an incredible woman who I had the privilege of meeting – she understood my fears and told me not to be the first prejudiced person in his life. She showed me that I was limiting his ability. That's when I started working on his independence and encouraging him to achieve his dreams. Today, I help him write his stories, and we are working on a video game and a book. I always tell him that he can be anything he wants.
What is one of the ways FA has POSITIVELY affected your life? I found a collective purpose. I fight for public policies for rare diseases and people with disabilities. I really enjoy welcoming new mothers who join the group.
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