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FARAFARA Cure FA

Evan Luebbe

EvanLuebbe1Name: Evan Luebbe

Age: 19

Where do you call home? Cincinnati, OH

What is a current goal you have with your education? I graduated from Lakota High School in May of 2015. I’m now attending Miami University (OH) and majoring in Forensic Criminal Justice with a minor in Psychology.

Who do you live with? I live with each of my parents and brother, Graham.

What's a typical day for you? I go to school on Monday and Wednesday and have an aide with me for 4-5 hours on the days when I don’t have school. I go to the gym 2 times per week to lift weights and I also have exercises I do at home every day. It’s important to me that I stay strong. I can still walk very short distances with my Dashaway walker, so I try to walk as much as possible.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed with FA at age 8 in second grade. I went in for an annual physical that year and the doctor heard a heart murmur that hadn’t been there before. I was also starting to become a little unsteady when walking and had fallen a few times. I was sent to Cincinnati Children’s Hospital to be seen by neurology and cardiology. They also took some blood for testing. My mom got a phone call about 6 weeks later with the diagnosis.

Are there any others with FA in your family? No

Describe your transition from walking to walker/wheelchair. After 5th grade I wasn’t able to walk unassisted. I had spinal fusion surgery at age 11, which changed my ability to walk. I use my wheelchair most of the time, but throughout the day I try to walk as much as I can.

EvanLuebbe2What do you like to do to stay active and what type of exercises work for you to stay strong? I go the gym 2 times per week with my Dad to lift weights. I do bridges, leg exercises, push-ups, side leg lifts and abs. I do some form of exercise every day.

Do you have any hobbies or special interests? I love WWE, football and enjoy watching other sports too.

What is a good trick to make daily life easier? I motivate myself from within and talk to God.

When FA gets you down, what do you think/do to feel better? I don’t let it get me down. I get frustrated with my body at times, but I push through it. I’ve never gotten mad about having FA. It’s a part of who I am.

What is one way living with FA has POSITIVELY affected your life? It’s made me an extremely determined person and I’m stronger because I have FA. I feel it’s made me the person I am today and I’ve always said I’m thankful for FA in that way.

What is a favorite motivational quote of yours? I don’t really have one…I stay pretty self-motivated. I feel I’ve learned a lot living with FA. I have a deep relationship with God and that helps me get through each day.

What is piece of advice that someone with FA has given you that encourages and inspires you? Everyone has something in their life, mine happens to be FA. You have to fight to stay strong and know there’s a bigger plan.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would share that it’s important to come to terms with having FA. God has a plan for each of our lives and there’s a bigger reason we have FA. Fight every day to be strong and stay positive.

What is the first thing you want to do when a cure/treatment to FA is found? I would want to do squats with a barbell. I’ve always wanted to do them.

“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? I have something that causes physical weakness in my, but it doesn’t make me a weak person. In fact, I am an incredibly strong person, inside and out. You have to keep fighting hard each day until you beat the disease. I know I have a disability, but I don’t see myself as disabled. No matter what FA does to my body, the important thing is how, why and the manner in which I lived my life every day.

Tell us a little more about you….I love my family, my pets and everyone who has supported our fundraising over the years. It means a lot to me.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday.

MandyDavismtcsignatureMandyDavis 

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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