Monique GutzName: Monique Gutz

Age: 32

Where do you call home? I live in Blumenau, in the south and subtropical area of Brazil, where the climate transitions between the predominantly tropical climate of my country and the most temperate climate of Argentina.

Education: I finished high school

Which contribution has FA had to you or your career? FA taught me to value little things, small achievements and to have confidence in the future.

What is a typical day for you? My days are always very busy. I go to physical therapy 4 times a week, plus weekly phono-therapy, occupational therapy and psychologist. I also visit constantly my cardiologist and other medical specialists.

How long have you been living with FA? My parents first noticed my clumsy way of walking when I was 6 years old. They tried to find an explanation right away and took me to several doctors, but my FA diagnosis was given much later when I was 15.

Is there anyone else with FA in your family? Nobody else. Only me.

Monique Gutz 2Describe your transition to a wheelchair: At the beginning, it was very hard for me to accept the idea of using a wheelchair. I thought I would be in prison. Little by little, I discovered the wheelchair was my way to freedom, not a prison.

What do you like to do to stay active? I love to read; my parents and I also travel to several places when we get a chance. I also have several games on my tablet, which entertain me and also force me to train fine movements for my fingers.

Do you have any hobbies? I have two hobbies: I love to stroll on the beach boardwalk and go to bookshops.

What's your trick to dealing with daily life with FA? If your world is only black and white, give it a little bit of color. Live today as if it was your last day.

When FA puts you down, what do you think/do to feel better? It doesn't matter how many times I fall. The important thing is to be able to get up and get better.

How FA affected you POSITIVELY? I learned to give value to every little thing in my life. We are a very closely tied family- my parents, myself and my two lovely dog-sisters.

What is your favorite quote? God didn't say that life would be easy. HE says that life is worth living.

Who inspires you? My Mom is the one who is in touch with the Brazilian FA community. But my strength comes from her and my Dad, they are my role models.

Monique Gutz 3Which advice would you give to someone newly diagnosed with FA? God doesn't choose the most capable. He empowers the chosen ones. To have FA isn't the end of life. We simply need to adapt to it.

Which would be the first thing you would do when a treatment/cure is found? I never thought about it. I never gave up on anything I wanted to do. The only thing I would never do is radical sports. I think life is precious and don't want to risk it.

"I have FA, but FA doesn't have me." What does this statement mean to you? This sentence means a lot. I have FA, but I don't live my life focused on FA, I don't spend my time thinking that it is going to knock me out. FA is just a detail in my life.

Tell us more about yourself...I am the only child and my parents are first cousins. When I started high school, my Mom started going to classes with me as a student. At that time, I wasn't able to walk by myself and there wasn't as much support as the people with disabilities have nowadays. I had my first cardiac episode when I was 19 years old. It was when my family, myself and my cardiologist came to the conclusion that I should start using a wheelchair. The idea was to spare my heart from too much physical effort. After having had ten more cardiac episodes, every time I came out with more will to live life to the fullest. I was diagnosed with diabetes in 2013, but it is just one more detail in my life. These several little things don't prevent me from saying that I am a happy person. I won't let anything take happiness away from me.

Natache Signature