Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

David Willis

DavidWillis1Name: David Willis

Age: 41

Where do you call home? Manchester, Connecticut

Education (degree(s): Bachelor of Science – Occupational Safety and Health; Associate of Science – Treatment/Prevention of Alcohol and Chemical Dependency.

What is your relationship status? Do you have children? Single/Divorced with an 8-year-old son. Currently live alone in a single-story ranch.

What's a typical day for you? Since college graduation in 1999, I have worked for United HealthCare in many different capacities. In October 2017 my employer had mass layoffs which I was a part of. My typical day has changed drastically over the past 6 months. I currently spend my days trying to gain employment!

How long have you known you are living with FA? I have late on-set FA. I was in my late twenties when I began having balance problems and in my early thirties when speech difficulties began. It took countless doctors and about five years to get a confirmed diagnosis of FA. I was officially diagnosed in 2010.

Are there any others with FA in your family? None.

Describe your transition from walking to walker/wheelchair. In the beginning I tried hard to fight it. I would rely on walls, furniture, or whatever I could grab onto to stay upright. I shortly there after began using a cane (which didn’t help much but would reduce the speculation of onlookers regarding my sobriety). I currently have a few rollators in my house and use a Travelscoot (light weight scooter) if I leave the house. 

DavidWillis2

What do you like to do to stay active and what type of exercises work for you to stay strong? I try to remain as active as possible doing yard work and the usual chores of owning a home and having a young active son.

Do you have any hobbies or special interests? I love tournament fishing. I am in a club that holds about two tournaments a month. I recently sold my bass boat as it was getting tough/dangerous to maintain and operate. I am still in the club and fishing as a “non-boater”.

When FA gets you down, what do you think/do to feel better? Try and do something that makes you smile and feel better. Take a drive with your dog, get a coffee, watch a movie. Try and be around people that understand your issues and needs and make you feel good regardless of your handicap.

What is one way living with FA has POSITIVELY affected your life? It has shown me how good people really are and can be. The things people do for me, or have done since my diagnosis baffles me!

What is a favorite motivational quote of yours? When I die, don’t come to my grave and tell me how much you love me and how much you miss me, because those are the words I want to hear while I’m still alive.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Stay strong and positive. Don’t fight what is happening and try to accept it. It isn’t easy but keep doing what you love for as long as you can, then find other things you love to do and can do with FA.

What is the first thing you want to do when a cure/treatment to FA is found? Run with my son and use his hover board!

"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? Just keep going! While FA has greatly changed the way I do things, it hasn’t stopped me. Never give up.

ErinONeil mtc sig 17


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.

 

More articles from this author