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FARAFARA Cure FA

Christie Battaglia

 

 

 

Name: Christie Battaglia
 
Age: 29
 
Where do you call home? Baton Rouge, Louisiana
 
Education: Bachelor’s degree from LSU
 
What is your relationship status? Do you have children? single, never married, no children but I have two 4 year old Chihuahuas, Joey and Chandler, that I consider my children
 
What's a typical day for you? Monday-Friday, I get up, walk my puppies, get dressed for work and head to my office. I am the marketing/event coordinator for 3 local magazines, so normally I am at my office 9-5, but occasionally I am out and about at meetings or different events we put on.  On Tuesdays and Thursdays, I leave the office at 2:30 for OT/PT. After work, I head home, walk the puppies and decide what to cook/order for dinner and we just rest and watch TV. Saturdays and Sundays are always different, I try to stay as active as possible and most of my weekends are filled with going to see live music.
 
How long have you known you are living with FA? (When and how were you diagnosed?) I went for my first neurologist visit last August (2014) my mom was concerned because I kept having pretty serious falls. We had no idea it could be something so serious, I honestly thought he would tell me that some people are just clumsy and to work on my core strength, after a few tests (walking, reflexes, etc.), he ordered MRI’s and other tests, when they were all negative, he referred me to a specialist at the Movement Disorder Center at the Baylor College of Medicine in Houston who told me I had all the symptoms of a genetic ataxia except that no one in my family had it so he was thinking it was probably one of the SCA’s. We had the genetic testing done and it came back in June that I do in fact have FA. Mom and Dad were both carriers and it has continued to be recessive on both sides of the family until me!
 
Are there any others with FA in your family? Not a one.
 
Describe your transition from walking to walker/wheelchair. I wobble when I walk, but I don’t need any assistance devices full time yet. I did get a cane to use when I go out at night and I will be standing for long periods of time or walking somewhere that is crowded to help me balance.
 
What do you like to do to stay active and what type of exercises work for you to stay strong? I didn’t do much before I started going to the doctor because most physical activity was very difficult if not impossible and I didn’t want to hurt myself. Now I am in physical therapy twice a week, and we mainly focus on gait and strength training so I do a lot of stability exercises. My therapist has given me the go ahead to start going to the gym, but just be aware of my limitations and always have someone with me.
 
Do you have any hobbies or special interests? I go to concerts all the time, from national acts to local music. In the past few months I’ve seen Garth Brooks, Gary Allen Coe, 12 Stones, Kenny Chesney, Miranda Lambert, Framing Hanley, Yellowcard, J Cole, Aaron Lewis, Talib Kweli, Nothing More, Waka Flaka Flame, 10 years, Cole Swindell, Joe Nichols, Wale.
 
What is a good trick to make daily life easier? Daily affirmations. I have positive/funny quotes everywhere. I find them on Facebook or Pinterest and print them out. They really do start to creep into your subconscious. 
 
When FA gets you down, what do you think/do to feel better? Before I found out I had FA, I would get down on myself that I did something to cause this. Since finding out I have FA, I remind myself that I have had this since the moment I was conceived. This has always been God’s plan for my life and it didn’t “set in” until I was strong enough to help other people. There are still times when I get upset-I have cried over the fact that I can’t wear high heels any more (it’s one of those things that lessens my femininity) but one day it occurred to me that when I’m in a wheelchair, I can wear 6in heels all I want, without fear of falling over!
 
What is one way living with FA has POSITIVELY affected your life? It has definitely made me to remember to live in the moment more. There are things I’ve always wanted to do, like hiking, that I must do sooner rather than later. I’ve created a “handicapped bucket list” of things I want to do before I am limited by a wheelchair.
 
What is a favorite motivational quote of yours? When I look at myself in the mirror, I see a unicorn. A badass unicorn.
 
What is piece of advice that someone with FA has given you that encourages and inspires you? It’s not really advice, but seeing other people with FA who are already in a wheelchair but are living such a normal life, really gives me hope and encourages me to not be ashamed of what my future holds.
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don’t give up! Having FA makes us special! Keep laughing.
 
What is the first thing you want to do when a cure/treatment to FA is found? Play sports, any sport, just to be able to coordinate movements to hit/catch/throw/kick a ball around and be able to run!
 
"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 will not be told I cannot do something because of my disability, I might find out on my own that my body doesn’t cooperative with everything, but I will at least try before I let someone tell me I can’t.
 
Tell us a little more about you…..I grew up in Louisiana, moved to Nashville to go to school for music business. I bartended at Coyote Ugly while I lived there (yes, like the movie, danced on the bar and everything) then moved back home and finished school at LSU. I continued bartending until I started at the magazines, planning events. I realized I just liked making other people have a good time. Music is still my favorite thing, concerts have always been my favorite thing to do. I went to six NSYNC concerts between 7th-10th grade. When I was 18, I jumped a few fences and snuck backstage to meet Maroon 5.
 
And just a little more...
 
With your obvious love of music, have you thought about creating a benefit concert for FARA? I am already working on a benefit concert...I turn 30 in November and am planning on doing a big 30th birthday party/benefit concert. I have the fundraiser forms from the FARA website already, and I'm just in the idea phase right now. This one definitely won't be anything big, just local bands, most likely. Being an event planner, once I got my diagnosis, all kinds of fund raising event ideas started coming to me! I am a firm believer that everything happens for a reason, and I know that part of why I wasn't diagnosed until now is so that I have the event experience I do. I feel like my purpose is to plan parties, events, fundraisers, etc to raise awareness and money for research.
 
We have no doubt your 30th birthday beneit concert for FARA will be absolutely fantastic and we can't wait to read the awesome blog post about it in a few months!! ;) Thank you, Christie! 
 
We are STRONGER TOGETHER! Find a new Meet the Community interview every Monday.
 
 

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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