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FARAFARA Cure FA

Jordan Murphy

Jordan MurphyName: Jordan Michael Patrick Murphy

Age: 25

Where do you call home? Chuluota, FL

Education: High School Diploma, some college

What's a typical day for you? A typical day for me includes various appointments, personal care activities, and, truthfully, at this point, much daydreaming.

How long have you known you are living with FA? I was diagnosed at age twelve but was symptomatic at a much younger age. It took a long time to diagnose. We were lead to believe my flat feet were to blame for my un-coordination. I've known for thirteen years.

Are there any others with FA in your family? I have a cousin in Iowa on my mom's side of the family. He is 28

Describe your transition from walking to walker/wheelchair: I went directly to a wheelchair after my spinal fusion extension surgery in 10th grade.

Jordan Murphy 5What do you like to do to stay active and what type of exercises work for you to stay strong? A couple of years ago, I would have been able to provide a much more interesting answer to this question. As of now, most activities are too risky for me to do because of heart, vision, dexterity, etc. And I'm still seeking my "new normal."

Do you have any hobbies or special interests? Singing and writing my own material. Overall, entertaining and creativity have always been loves of mine.

When FA gets you down, what do you think/do to feel better? I ponder God and all His positive energy. I think about friends, family, and pets. Singing songs I've created lyrics for, and working with my friend Miss Natasha to put music to them are all ways that provide me comfort.

What is one way living with FA has positively affected your life? A positive of living with FA is that it has honed my compassion for others. Even before all of this, I remember feeling the drive to help. Now being the one that needs 24/7 help, gives me a different perspective on the world. Every day I think about people and how to make their lives easier or better. Sometimes I can get my messages out there or make things happen to offer a hug to the world. This also brings me comfort.

What is a favorite motivational quote of yours? "The most beautiful people have seen the darkest parts of this world." – an author that goes by the name "My Mind."

What is a piece of advice that someone with FA has given you that encourages and inspires you? "No, I've not been to Hell, but I have FA...it's kinda the same thing." My cousin joked about this one and it resonated with me. It is funny but there is also a little bit of truth. When paired with my favorite quote from above It inspires me to think we have been through something like Hell thus, we are beautiful people.

Jordan Murphy 2What is the best advice you could give to a person who has been newly diagnosed with FA? I think it's important to keep in mind wherever your degeneration from this condition takes you it's not your fault it's the nature of our condition. There is a saying, "use it or you'll lose it." For me, it was, "Use it until you lose it or you'll lose it quicker." It will be possible to adapt to FA, please keep in mind it will be necessary. It caused me lots of turmoil thinking FA was not something I was going to need to adapt to.

What is the first thing you want to do when a cure/treatment to FA is found? After a treatment/cure is found, I will return to the gym to work off this blubber and atrophy, then try everything!

How do you live your life in the face of adversity? My weapon in adverse circumstances- knowledge. I gather information and learn how to adapt.

Tell us a little more about you: I was born in LaGrande, OR. My parents moved me to Florida when I was a year old. I never had much of a love for school, but love for dancing, acting, and singing. I did experience bullying for being in choir and drama as a boy. That combined with my progressing FA made me an easy target in middle school. I attended some college but had to drop out when my vision quite suddenly became non-correctible. Simultaneously my hearing and overall FA symptoms began worsening. In conclusion, as is our constant as FAmily, I'm still working to find my "new normal" with the aid of various doctors, family, and friends. And God.

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