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FARAFARA Cure FA

Megan Rush

MeganRush 1Name: Megan Rush

Age: 33

Where do you call home? North Baltimore, Ohio

Education (degree(s)): Bachelor’s of Science in Health Information Management

How will FA add to your future [career]? I currently work at a Durable Medical Equipment place. I have had many opportunities to share my own experience using certain items. People seem to appreciate my view on things.

What is your relationship status? Married for 4 years.

Do you have children? 2 - a boy(2) and a girl(8).

What's a typical day for you? I wake up at 6 and get my kids ready for the day, I drop my son off at the babysitter’s house and my daughter at school. I then go to work from 8-5 or 5:30. I come home, figure out dinner and get the kids ready for bed (unless there are sports)…that’s it. I work part-time for now so it’s only 3 days a week. My off days, I stay at home with the baby. Sometimes I run errands and sometimes not.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 18. I was a senior in high school. Before that, I was very athletic, (track and volleyball mainly). I was picked on because of the way I ran, I was clumsy, I started having migraines and I went to neurologist. While I was there, I asked him about my walking and the tests began. 

Are there any others with FA in your family? My dad’s cousin’s daughter. I think that makes her my like 3rd cousin. She is more progressed than me, just a couple years younger, and was diagnosed earlier.

Describe your transition from walking to walker/wheelchair. When I was 25, I was furniture walking, I worked at a department store full time and used a cart to walk mostly there, I got pregnant, would fall often and my OBGYN told me that I had to use a walker or she was putting me on bed rest. I had my great aunt’s old rollator, I used that for years, a couple years later, I got a wheelchair and only used it to go to classes (campus was too big to walk around) when my daughter started walking/running, I permanently began using my chair so that I could keep up with her.

MeganRush 2What do you like to do to stay active and what type of exercises work for you to stay strong? I used to lift weights 2 times a week, I got a job almost a year ago now and I try to swim now but only once a week if that. I’m always on the go though with my kids.

What is a good trick to make daily life easier? A good attitude!

When FA gets you down, what do you think/do to feel better? Usually I am down for a day but then I play with my kids, I get out of the house and I realize that I have a lot of ABILITIES, not just disabilities.

What is one way living with FA has POSITIVELY affected your life? I got to stay home with my babies, didn’t have to leave them to work, not everyone gets that opportunity. I think FA has positively affected my friends and family more. No one thinks about accessibility until they have to, I think that my friends, family and other random people have had their eyes opened to a new reality through me. I figure that is a purpose of mine. To teach and inspire others.

What is a favorite motivational quote of yours? “You never know how strong you can be, until being strong is your only option.”

What is the best advice YOU could give to a person who has been newly diagnosed with FA? It’s okay to have bad days and feel sorry for yourself, but do not let FA define you, become what you want the definition of someone with FA to be. Never stop fighting.

What is the first thing you want to do when a cure/treatment to FA is found? Play on a playground with my kids, and become a runner.

"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? People at my gym and random people tell me often how inspiring I am. I live this quote, I live my life despite FA, it is not who I am and it will not take over my mind or my body until I have fought as hard as I could fight.

Tell us a little more about you…I am forever an optimist. I always have been. I hope that one day my kids see how hard I have fought and strive to be optimistic and strong despite trials in their lives.

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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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