aj-perez-2 Name: AJ Perez

Age: 34

Where do you call home? Austin, Texas (gotta have that BBQ haha)

Education: I have my associates degree, I’ve always chosen the work experience.

I do have a tremendous amount of respect for those who have their degree, especially those who climb all obstacles and conquer the difficulties that stand in their way. I’m in the process of creating an opportunity for people with FA to have their shining moment, bring awareness to FA, and funds to families in need of assistance due to FA. I use to be so mad at FA and I still am, but I’m also happy because it helped guide me to my purpose. I want to help those affected by FA, be that older brother or shoulder for those to lean on... Know this, I’m fighting with you and I will always be in your corner even after they find a cure, I’m here for you!

Tell us about your family: I am married, and have been married for 12 years. FA has definitely implemented itself into our marriage. At times it makes me feel like more of a patient than a partner. I also have two kids, a daughter who is 11, and a son who is 7. They are both so active, and keep me going.

What's a typical day for you? (deep breath haha) Monday - Friday I TRY to get up at 4:30am to go to the gym 3x’s a week (if you don’t use it you lose it) I have a full time job working with special education kids at an elementary school. Then I come home, usually fall asleep and go to my second job from 6-10:30. On the weekends we go go go, usually kids soccer games, or family adventures. We like to go see and do things. FA definitely shows its face but I CAN'T let it win! My legs and lower body absolutely feel the effects; when they weaken, I stumble, often catching myself from falling (if I’m lucky) on nearby walls.

How long have you known you are living with FA? I was diagnosed two years ago, but I have been living with symptoms for about 10 years. The first symptom I noticed was my speech. I was working as a host for Disney, and my manager told me I was slurring my words. From there I was going from doctor to doctor which was so stressful, irritating, doubtful, and overwhelming. Being told nothing is wrong when I knew something was wrong with my body was so aggravating. Finally a neurologist recommended a DNA test to see if that would provide answers.

Are there others in your family with FA? There are currently no other known family members with FA.

Describe an adaptation and/or transition you have had to take due to living with FA. I hear the “drunk, long weekend, you drink on the job” comments regularly because I don’t use a walking device, stumble and slur my speech. I’ve had to change(adapt) to many, all of this “new” me. The hardest part is seeing my kids worry about their dad. They know about my Cardiomyopathy, and that dad’s heart isn’t strong. When they see me fall, choke on eating, drinking, or breathing, and not having their dad be and do all things I used to, kills! But FA has helped me show them that no matter the circumstance we keep going to help others as much as ourselves.

aj-perez-2What do you like to do to stay active and what type of exercises work for you to stay strong? I like to ride my trike and go to the gym. It gives me a sense of being able to control my uncontrollable and weakening muscles.

Do you have any hobbies or special interests? I like to cook, bbq. Although it’s definitely getting harder to use a knife I don’t let that stop me. Probably Dangerous haha. I also like fixing things which is good because the kids provide a lot of work.

What is a good trick to make daily life easier? I have had handrails installed by my bed and shower that help tons, especially the one by the bed! Also in the shower are textured platforms and a chair.

When FA gets you down, what do you think/do to feel better? Sigh, the past two years have been a spaghetti bowl, I'm down and think I’m on the right track just to head right back into the mess. There’s a lot that I fight for but a lot that overwhelms me. I try to stay positive and upbeat but I’m only human and understand that this situation isn’t a fairytale that will have a happy ending. For me that's one of the many reasons that I fight and do all I can in providing information for a cure. I feel like a big brother who wants to provide that safety, support, and just a shoulder to lean on through this fight.

What is one way living with FA has POSITIVELY affected your life? I’ve been able to find my purpose. I want to raise awareness, funds, and personal spirits through this journey. I’ve already met incredible, amazing people, and I plan on meeting and helping even more.

What is a favorite motivational quote of yours? My favorite saying is from NIKE - Just do it. No matter the circumstance, happiness, pain, willingness, tiredness, (JUST DO IT).

What piece of advice that someone with FA has given you that encourages and inspires you? You’re going to have bad days. It's ok to be down, just don’t stay down there. Remember to get up.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Prepare yourself. . . prepare yourself to meet and be a part of the most amazing people that you are now connected to. Prepare yourself to be a warrior, protecting yourself, your people, and loved ones. Remember it's ok to be down but get back up and just do it!

What is the first thing you want to do when a cure/treatment to FA is found? I want to see the happiness and inspiration it brings to all of our FAmily.

"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? FA is a condition although it has certain obstacles to overcome, I have to live my lifestyle. FA wont stop me, sure sometimes it’ll discourage me but i can’t let that feeling takeover and win.

Tell us a little more about you… FA has totally changed me and my family's life, especially the Cardiomyopathy part. It's definitely a black hole sucking up one thing after another but I’m too stubborn, proud, maybe too hard headed to know my own limits. But in order to be a fighter you have to be stubborn with very smart people in your corner.

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