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FARAFARA Cure FA

Amy LaPorte

AmyLaPorte1Name: Amy LaPorte

Age: 38

Where do you call home? Omaha, Nebraska

Education (degree(s): I didn’t finish college. The doctor who diagnosed me told me to stay home and enjoy my baby with whatever time I had.

What is your relationship status? Do you have children? I am married with four children (20, 18, 15, and 12).

What's a typical day for you? “Typical” is a word not often used since my diagnosis of Friedreich Ataxia (FA). Normally, I wake up with my husband, and he wakes our two youngest boys After he leaves for work, my mom comes to our house daily, she helps me prepare for the day,. She takes the boys to school, then comes back to our house and takes me to the gym. I go to the gym five days a week for approximately two hours. After the gym, I run errands if necessary and go back home for lunch. Following lunch, I enjoy reading or watching TV - my leisure time! My boys come home from school mid-afternoon. I make dinner (often with my kids help). My husband comes home from work late afternoon, and we enjoy our time together until we call it a day.

How long have you known you are living with FA? I was officially diagnosed when I was 20, but knew there was something wrong around 16. I am 38 years old now.

Are there any others with FA in your family? I had never heard of FA before my diagnosis. 

Describe your transition from walking to walker/wheelchair. Truthfully, I didn’t stop walking when my doctor initially told me to do so. The thought of transitioning to an Assistive device was daunting. My knees started hyper-extending unfortunately, causing me a lot of knee pain.

AmyLaPorte2Describe an adaptation and/or transition you have had to take due to living with FA. I recently had urinary diversion surgery to stay as independent as possible for as long as possible.

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 five days a week for approximately two hours each. I work with a trainer twice a week. I love to do cardio on the nustep, punching bag, and battle ropes.

Do you have any hobbies or special interests? I go go to the gym, travel, read, see movies, and spend time with my family.

What is a good trick to make daily life easier? I think staying positive helps and managing stressful situations.

When FA gets you down, what do you think/do to feel better? I usually reach out to my husband, and friends, if I start feeling like a useless burden.

What is one way living with FA has POSITIVELY affected your life? I think I appreciate the little things more and have more patience.

What is a favorite motivational quote of yours? It’s not a quote per se, but I often tell my children that we can not control the things that happens to us, we can only control our reactions to them. Its the only thing in life we have control over.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Be as flexible as you can for as long as you can, remain humble, and learn the art of patience. I got to the point that I would only do activities that were set up the way I expected and it greatly limited me.

What is the first thing you want to do when a cure/treatment to FA is found? Dance with my husband. We never danced at our wedding even though I wasn’t in a wheelchair yet. I never imagined it would be my biggest regret, but it is. I’ve never danced with him.

"I have FA but FA doesn't have me." I live my life despite living with FA. I love my life even though I have FA.

Tell us a little more about you...I’m 38 years old, married to my best friend for 14 years and have been together for 20 years. My family is everything to me. They are great support for anything I need.

AndreaKiess mtc sig 16


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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