Josue-Lira Name: Josué Lira

Age: 22

Where do you call home? I live in a rural area around the city of Sao Caetano, in the State of Pernambuco, Brazil.

Education/Career: I finished high school.

What’s a typical day for you? I spend my days taking care of the cattle on my parent’s farm. I start my day having breakfast and watch my mother milk the goats. After the milk is collected, I help her to take the herd back to the pasture and sometimes my nephew helps us. The next round is to feed the chickens and collect their eggs. In the afternoons I walk the farm with my dog and do some weeding. This is an everyday job and essential to keep the pasture productive.


How long have you known you are living with FA? I was diagnosed exactly a year ago.

Sandra Johnson Are there any others with FA in your family? Yes, my youngest brother.

Describe your transition from walking to walker/wheelchair. I am still ambulatory and hope to keep it for a long time, although I have partially lost my independence. I am not able to travel alone anymore.

What do you like to do to stay active and what type of exercises work for you to stay strong? Living in the countryside and on a small-scale farm doesn’t give much time to work out. My work with the animals and my chores already demands a lot of physical effort and keeps me in good shape. I really enjoy what I do for a living and also take pleasure in having long walks in fields.

Sandra Johnson Do you have any hobbies or special interests? I enjoy studying the English language. I have a dream of being an English teacher or doing a type of work that requires the use of that foreign language. I am already training my skills with someone. The first step is to be able to read books and watch movies. The following step will be to speak the language.

What is a good trick to make daily life easier? I try not to let my difficulties and limitations affect me emotionally.

When FA gets you down, what do you think/do to feel better? I go for long walks, watch TV or try to be alone for some time.

What is one way living with FA has POSITIVELY affected your life? I think the fact that I have to be physically fit in order to fight the disease is a positive effect.

What is a favorite motivational quote of yours? I don’t have a quote, but I think that living in direct contact with nature is very motivational.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Don’t worry about what other people say or think about you. At the end of the day, nobody is perfect. Besides, there are many people in a worse condition than me. I have nothing to be afraid or ashamed of. I keep moving on.

What is the best advice YOU could give a person who has been newly diagnosed with FA? Never lose your faith and courage. God only gives big battles to real warriors.

What is the first thing you want to do when a cure/treatment to FA is found? To go to a church and thank God.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It means that we have to stay mentally strong and determined to fight the disease. When you wake up, remember that you have a challenge every day and that is up to you to keep the fight going.

Tell us a little more about you… I am a young man, a dreamer in love with nature and animals. The last year has been like a long journey. I got my diagnosis exactly a year ago and it has been a long work of body and soul to deal with the new reality and adjust my dreams and expectations about life. But the flame of hope for treatment and cure is still shining inside me.

Interviewed by: