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FARAFARA Cure FA

Sam Brown

Name: Sam Brown

Age: 14

Where do you call home? Allen, Oklahoma

Education: 8th grade

How long have you been living (or known you are living) with Friedreich's Ataxia? I was eight years old and in second grade when I was diagnosed.

Describe your transition from walking to walker/wheelchair. My chair has made it so much easier getting around - kinda made me lazy. Although, I do wish I could keep my legs straight with a walker. I started using a chair full-time before I was 10. I really don't remember much about that time.

What do you like to do to stay active and what type of exercises do you do to stay strong? I like to kick my legs out when they are hurting and I stretch my hands out lots, I also swim in the summer and have a weekly physical therapist. He helps me stretch; I feel lots better after working out with him. Do you use any tech aides? if so, what works or hasn't worked for you? I have an iPad with a Proloquo app that I can speak with. Still learning how to use it.

What's your most comfortable pair of shoes to wear? My Sanuks work good.

Do you have a diet plan you like to follow, and why? I like a variety of foods but I have to avoid sugary foods and count my carbs to control my diabetes. (Sam was diagnosed with Type 1 diabetes exactly two years ago on Labor Day weekend. He now wears a Medtronic insulin pump 24/7)

Do you participate in any adaptive sports or recreational activities? I like to hunt deer and turkey. So far I've killed two deer and two turkeys. I have a special stand that holds my gun while I'm in the hunting blind. What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? The different kinds of people I've gotten to meet and getting to get to go on trips that lots of others don't get the chance to do.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? "It aint that bad. You will have to go through tough things but it will be okay. God will watch you and carry you. I feel He's done that for me."

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Take it as soon as possible!!!

"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 have FA but it doesn't have all of me. I just deal with it and ignore it. I toughen up a lot and pray lots. That's how I deal with hard things.


We are stronger together! Find a new "Meet the Community" interview every Monday. Stephanie

 


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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