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Osama Alawik

Screen Shot 2020 07 24 at 10.04.20 AMName Osama Alawik

Age 20

Where do you call home? Tripoli, Lebanon

Education: Ever since I was young, I have had an obsession with computers. When I was diagnosed with FA, I didn't think I would be able to achieve that dream. I knew it would be physically difficult, but I was going to do it. I finished high school three years ago with Information Technology diploma and now I’m studying Computer Science.

Who do you live with? I am single and I am currently living in Istanbul, Turkey.

What's a typical day for you? A typical day for me is waking up, meditating, training my body, lifting weights while I usually listen to music. I love watching Japanese anime or English series, and I play a lot of video games. Some days I stay in bed all day. It depends on my energy.

How long have you known you areliving with FA? Some of the symptoms showed when I was 4-5 years old. In July of 2010, my parents took it more seriously because my balance loss was becoming more obvious. It felt like a lifetime of tests: they checked me for every disease in the world. In the end, I got diagnosed with FA in a clinic, but the doctor told us we need to do a genetic test to make sure. I did that one as well on the 12th of December, 2012. On the 3rd of April, 2013, I received the results of the genetic test. This is how I was diagnosed with FA. It took three months to finalize the test results. In September of 2013, my chest started hurting me. My mom took me to a cardiologist, so he made an ECG. This is how I knew that I had cardiomyopathy. In 2015 my back scoliosis started showing heavily, so I had to begin wearing a special brace.

Screen Shot 2020 07 24 at 10.06.39 AMAre there any others with FA in your family? I am the only one in my family who has been affected.

Describe your transition from walking to walker/wheelchair. I am presently using a manual wheelchair, but I can walk short distances if I’m holding
onto someone.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to the gym, do some pull-ups, also I lift weights, and I do my morning workout in my room, like bridge move and push-ups.

Do you have any hobbies or special interests? I love playing video games on my Xbox or on my laptop. Sometimes I raise money to FARA through my stream. I like reading books or watching series or Japanese anime because I enjoy anime. I love being surrounded by people who make me laugh.

What is a good trick to make daily life easier? I do always try to find the bright side in life, like what Dumbledore said: “Happiness can be found even in the darkest times if one only remembers to turn on the light.”

Screen Shot 2020 07 24 at 10.07.56 AMWhen FA gets you down, what do you think/do to feel better? When I’m depressed or feel down, I call my friends, and they listen to me, or I sit alone and listen to music. Sometimes I talk to my gaming buddies like Hamza, Wissam, and Tareq as they’re the best, or my FA friends who are really good to me. I also met new people at my university, and some became closer to me than my own family like Oxana and Fourqan: they are the best.

What is one way living with FA has POSITIVELY affected your life? Too many times I find myself thinking about what my life would be like without FA. I dream of what it would be like not to be so spastic with my movements, what it's like not to bounce off walls like a ping pong ball, or not to fall in an
embarrassing way every time I do something important. If all of that hadn't happened to me, I wouldn't have the appreciation I have for my family and friends, I wouldn't have met some of the most incredible people I know, some of these people became my best-friends like Jakob, Matt, and Kyle they’re my big brothers, and most importantly, if I didn't have FA, I wouldn't know what the hope is.

What is a favorite motivational quote of yours? “Why do we fall? So we can learn how to pick ourselves back up” (‘The Dark Knight’ trilogy)

Screen Shot 2020 07 24 at 10.09.52 AMWhat is the best advice YOU could give to a person who has been newly diagnosed with FA? Stay close to people who’re positive in your life, avoid getting depressed as it’s very hard to pull yourself out of it, and you’ll need support with that. Don’t feel like you’re fighting alone: rule #01 in FA community is that NO ONE FIGHTS ALONE. It took me 5 or 6 years to accept the fact that I would need help with anything I would do. Getting involved in the FA community really helped me. Now I have learned how to embrace myself. Also, I’m humbler than before.

What is the first thing you want to do when a cure/treatment to FA is found? When a cure is found, I will go around the world camping everywhere I can. I will play soccer again. To be honest, I can write a big list, but these things are the most important to me.

"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? First of all, I don't like that saying. I don't let FA control me. I control it. Even though FA may get in the way of me doing things physically, I can do everything but not as fast as normal people do it, slower and maybe somehow differently, but my personality is still 100% the same. FA just made me wiser, I maybe 20 but I think like 40-year-old guys. At least that’s what my friends say.

Tell us a little more about yourself. I grew up in a small town near Zgharta, Lebanon. Six years ago I moved to a new house in Tripoli, Lebanon. I used to play football and to do boxing since I was 7. I have a few medals in sports. I used to play as a midfielder for more than 3 years. Now I live in Turkey, and I study Computer Science. Hopefully, when I graduate, I can do what I have always wanted to do. I went to Australia once before for a clinical trial. And I went to a bunch of other countries like Turkey, Malaysia, Saudi Arabia, the Kingdom of Oman, Austria, Germany, Egypt, and Syria, of course (I would visit Syria every few weeks). And I started being a hardcore gamer when I was eight because my uncle bought me some video games. They were addictive because I had a good gaming computer. One of these games was a role-playing action game. I literally played for hours. That is how I would describe my childhood basically. I have 3 sisters and my mom, they all support and help me with anything I want. They're the reason that I'm still walking now. None of my siblings have FA. They never did the test to find out if they are carriers for FA. I finished studying with Information technology diploma 2 years ago, I couldn't go to a university in Lebanon, I'll do online certificates for cybersecurity and then I'll go to a university. I hope for the best but I prepare for the worst all the time. Depression is always hidden in the dark waiting for the weakest point to attack you in it, but I have the greatest support group, my closest friends, they're the best.

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