Name: Jafar Mirzapoor
Age: 25
Where do you call home? I am an Afghan refugee and currently I live in Iran.
Education (degree(s): I am graduated from high school and I study computer by myself
Who do you live with? With my parents and siblings (they are patients too)
How long have you known you are living with FA? I had it first in my family. I could walk and even bike and run till 18 then I couldn’t walk in a straight line.
Are there any others with FA in your family? Yes, my two sisters and one brother.
What do you like to do to stay active and what type of exercises work for you to stay strong? I like to stretch my hands and body.
Do you have any hobbies or special interests? I like movies, programming and coding, and chess too.
When FA gets you down, what do you think/do to feel better? This happens a lot since I could walk so well in the past, now it’s really hard for me. I cry and pray I hope it will be better one day.
What is one way living with FA has POSITIVELY affected your life? I think it provides me more free time.
What is a favorite motivational quote of yours? It’s from Tom Hanks, when he is asked the same question, he answers “This shall pass too!”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Use your time and talent at your best.
What is the first thing you want to do when a cure/treatment to FA is found? Wow that’s a good one, when I was a little better, I loved running and biking and I will start running and biking again.
“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 will be cured someday.
Interview by
Jamie Plourde