Jessica Hawley 1 Name: Jessica Hawley

Age: 29

Where do you call home? Chicago Suburbs

Education (degree(s): I am currently in my final semester of my MBA with an emphasis in Healthcare from West Texas A&M University. My undergraduate degree is in healthcare administration. I will finish my MBA in May of this year. I currently work in the product/tech side of CVS, assisting the building of pharmaceutical protocols. I plan to use my higher degree in order to move into high roles relating to my current position. I absolutely love my job and the company I work for.

Who do you live with? Currently I live with my oldest sister, her husband and their daughter. My black lab (who I am absolutely obsessed with) is also with me. :)

What's a typical day for you? My typical day is pretty busy! I get up and get ready for the day, usually working from 730-5 or so depending on the workload. I tend to take “dog” breaks every few hours.. Give him some attention and give myself a bit of exercise. Currently my evenings are packed with either school work or my work with my undergraduate sorority where I am an advisor.

How long have you known you are living with FA? I was officially diagnosed on my 23rd (and Golden) birthday :). However, a sibling was previously diagnosed so when I started exhibiting symptoms we all pretty much knew.

Jessica Hawley 2Are there any others with FA in your family? Only myself and 2 of my siblings. Oldest, older with FA, me with FA, younger with FA.

Describe your transition from walking to walker/wheelchair. My transition from walking on my own to not was pretty drastic. I was on my own (a weeble wobble). Then at 26 I broke my leg and never came back from it.

What do you like to do to stay active and what type of exercises work for you to stay strong? I’ve found stretching to be very helpful, the looser my muscles the easier it is to get around. Other than that I do core exercises and use the DB Method. Which is AMAZING for getting in those leg exercises while keeping balanced.

Do you have any hobbies or special interests? When I have free time, which is not too often these days, I greatly enjoy writing.

What is a good trick to make daily life easier? Think happy, this is advice for anyone, FA or not. Life’s hard, there are 1,000,000 reasons a day to bring you down… look to the positive and feel the happy whenever you can.

Jessica Hawley 3When FA gets you down, what do you think/do to feel better? Make someone laugh/happy. I am typically a very positive person so those times I do get down spreading that positivity bring me joy.

What is one way living with FA has POSITIVELY affected your life? FA has taught me patience.

What is a favorite motivational quote of yours? “You may not control all the events that happen to you, but you can decide not to be reduced by them” Maya Angelou

What is the best advice YOU could give to a person who has been newly diagnosed with FA? To keep going. It’s easy to just take the news and lose yourself and your dreams, don’t. Get degrees, take that trip, live!

What is the first thing you want to do when a cure/treatment to FA is found? I personally do not like this question. A cure or a treatment, though closer everyday, are not definite. Hope is beautiful, amazing and keeps our fight for research going. That being said, there are no guarantees in life. Do it now! Do not give up your life because you hope for something better in the future.

"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? It is what you make it. Just as said in the advice above, live your life. We can do anything.. Maybe with help or alterations but we can still do it.

Jessica Hawley 4

Interviewed by Andrea Kiess