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FARAFARA Cure FA

Rachel Manring

RachelManring1Name: Rachel Manring

Age: 25

Where do you call home? I call Pittsboro, NC my home because I grew up there. I currently live in Durham, NC because my FA symptoms have progressed significantly so I live with my husband and his parents so I can get more help.

Education: I have a high school diploma but walking through high school became difficult and almost impossible halfway through my freshman year. At that point I was too embarrassed to use a wheelchair or a walker so I finished high school online. After that, I completed a few online certification courses in early childhood development, child psychology and similar subjects.

By having FA and working in childcare, I can teach children acceptance of others with disabilities, which I believe is an important lesson to learn at a young age.

What is your relationship status? Do you have children? Who do you live with? On April 7th, 2014, I got married to a wonderful, understanding, helpful, and kind man. His name is Harrison Hill. He is always understanding and willing to help. We live on the third floor of his parents house (with our 11 dogs). Harrison carries me up and down the stairs. He helps me in the bathroom, in the shower and he even shaves my legs. We do not have children but I would really love to one day. 

What's a typical day for you? I usually sleep on a large memory foam bean bag chair. After I wake up my husband carries me downstairs to use the bathroom. He has to help me pull down my pants which is a little bit embarrassing. After using the bathroom I either go back upstairs or get ready to go out if I need to. Sometimes I have to wake up ridiculously early because my husband and I nanny for a family's 7 month old son. I have a lot of fun on those days even though it can be very tiring. Depending on when I get home, I usually go back to my bean bag, relax and watch some TV and cuddle with my dog.

How long have you known you are living with FA? When I was about 9 I got diagnosed with cerebellar ataxia but no one ever really looked into it closer. When I was 14 I looked up my symptoms and self diagnosed myself with FA. It wasn't until I turned 18, when I got approved for Medicaid, that I was able to get the genetic testing done to have an accurate diagnosis.

Are there any others with FA in your family? As far as I know, there is no one in family on either side that has FA.

Describe your transition from walking to walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. I am consistently having to adapt to my condition in everyday life. The biggest transition I have had to make because of FA was going from walking to being in a wheelchair. I was very embarrassed about relying on a wheelchair at first. I have overcome the embarrassment and realized that I can do so much more being in a wheelchair than I could if I refused it. Accepting the wheelchair is a challenge that I have conquered.

What do you like to do to stay active and what type of exercises work for you to stay strong? In general I'm not a very physical person and I really don't like to exercise. When it comes down to it, I have ridden horses all my life and have found that riding is an excellent core workout.

RachelManring2Do you have any hobbies or special interests? I wouldn't say that it is a hobby, but I do have several strong interests. I enjoy riding and being around horses. I love spending time with my dogs (all 13 of them!). I also enjoy watching stupid reality TV shows.

What is a good trick to make daily life easier? Don't let anyone tell you what you can't do. Everyone deserves to make up their own mind about what they can or can't do.

When FA gets you down, what do you think/do to feel better? One thing that will always brighten my day is being with my dogs because they love me unconditionally and don't judge me for being "different".

What is one way living with FA has positively affected your life? Having FA has opened my eyes to see the world from not just my perspective. I've really grown to appreciate the small things and to be grateful for what I do have in life.

What is a favorite motivational quote of yours? "Never regret anything that you do. " - unknown

What is a piece of advice that someone with FA has given you that encourages and inspires you? I have been told many times by people in the FA community to never give up, to just keep pushing forward and eventually it will all work out.

What is the best advice you could give to a person who has been newly diagnosed with FA? Never feel embarrassed about needing help or assistance with anything. This was something that held me back for a long time.

What is the first thing you want to do when a cure/treatment to FA is found? Honestly, I probably wouldn't want to be cured. I would be worried that I would stop being grateful for the little things.

"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 obviously have a physical disability but cognitively I am healthy. I live life in the face of adversity by not allowing FA hold me back from doing anything that I want to do.

Tell us a little more about you....I am very involved in the world of animal rescue and have 13 dogs, all of which are rescues. I am also trained to rehabilitate wildlife. I am a downright animal lover. I was born and raised in NC and am very proud of my heritage. I would never move out of state. I also love to cook and bake which I learned from my grandmother. I treat my hair like my baby. I dye it constantly and haven't had my natural hair color since I was 9. I guess you could say I use it as a distraction to take away from the fact that I am in a wheelchair.

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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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