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FARAFARA Cure FA

Kailey Newcity

Kailey Newcity copyName: Kailey Newcity

Age: 27

Where do you call home? Lake Charles, Louisiana

Education (degree(s): Bachelor of Science in Medical Assisting, but I cannot work in the field. I work as a check out receptionist (sit down job) at an Orthopedic Clinic part-time.

What is your relationship status? I have a boyfriend of 5 years who I live with. No kids.

What's a typical day for you? I work three days a week, do physical therapy twice a week, & see a chiropractor once a week.

How long have you known you are living with FA? I started having obvious symptoms 4 years ago & was misdiagnosed with Charcot Marie Tooth Disease in 2015. I found in February of this year that I actually have FA.

Are there any others with FA in your family? None, that we know of.

Describe an adaptation and/or transition you have had to take due to living with FA. I walk with a cane & wear AFO leg braces.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do PT, stretching, & light exercise. My balance is very unsteady so I have to be careful not to cause more harm than good.

Do you have any hobbies or special interests? I love to snuggle my giant pups.

Kailey Newcity 2 copyWhat is a good trick to make daily life easier? It's all about positive outlook. There's nothing you can do to change your genes, so suck it up, buttercup! Make the best of it & laugh at yourself.

When FA gets you down, what do you think/do to feel better? I try not to dwell, though I have good & bad days. I just slow down & relax. I have a great support system that I can lean on when needed.

What is one way living with FA has POSITIVELY affected your life? I have made friends that also have Ataxia & I have become less judgmental. Invisible diseases are hard & people that aren't aware or educated can be hurtful so I have learned & changed myself in that aspect.

What is a favorite motivational quote of yours? "Though she be but little, she is fierce" - Shakespeare

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Take it day by day, find a well-educated team of doctors that you trust, & join support groups. Everybody is affected differently but we can all relate.

What is the first thing you want to do when a cure/treatment to FA is found? I would like to walk into the ocean without help.

How do you live your life in the face of adversity? Having FA is almost more mentally draining than physically. I deal with stares & questions. Not being able to do things I used to is difficult. Again, a positive outlook makes a huge difference.

Tell us a little more about you...I'm quirky & like dogs more than people. I love pizza. I'm from Florida but moved to Louisiana in 2014. My family still lives in Florida so I visit often. My boyfriend & his family are amazing. They are very supportive & are always willing to help me not kiss the floor. Life's not easy but I love my friends & family. I'll be alright.

ErinPieper sig 16


About the Author

FARA Ambassador Program