CheneName Chene Venter

Age 19

Where do you call home? Western Cape, South Africa

Education (degree(s): I am of high-school age, and interested in becoming a book editor (proofreader).

What is your relationship status? I live with my mom and my twin sister. I have two more sisters and a brother.

What's a typical day for you? A typical day for me is rolling down to the beach with my twin sister and my dog. I also like to exercise during the day (yoga, cycling). My sister and I also have parallel walking bars.

How long have you known you are living with FA? My sister and I started to lose our balance in primary school. We were diagnosed in 2013.

Are there any others with FA in your family? Other than my twin, no.

Describe your transition from walking to walker/wheelchair. My sister and I, both, have been wheelchair-bound since 2016. I feel a lot more independent when sitting in my wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like doing yoga because it makes me feel more relaxed and calmer. I also like cycling on my recumbent bike.

Do you have any hobbies or special interests? I have developed a love for reading and I also like photography.

Chene CollageWhat is a good trick to make daily life easier? Doing yoga makes me think clearer and motivated for the day.

When FA gets you down, what do you think/do to feel better? I think of how thankful I should be because life could be so much harder. I take a deep breath and try again.

What is one way living with FA has POSITIVELY affected your life? Living with FA taught me that I am much stronger than I seem. I am very thankful for this life.

What is a favorite motivational quote of yours? Wake up with determination and go to bed with satisfaction.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Keep smiling and you can do it.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? FA may get you down but stand up and take a deep breath. You're stronger than you think.

What is the first thing you want to do when a cure/treatment to FA is found? I'd like to take up hiking in beautiful places.

"I have FA but FA doesn't have me." What does this statement mean to you? I'm different but I'm not defined by FA. Tell us a little more about you...I have a mom and a dog who I love more than anything. I love my family so much. I am a Christian. Me and my twin sister are very close. I thank my God for this life and I will live it. Please visit our blog page on Facebook. Search for "Our Journey With Ataxia".

Interview with Chene's Mom

Chene 3Your Name: Retha

Relation to FA patient(s): The mom :)


What quality or trait has been brought out the most in Chene despite living with FA? Their love for life and positive outlook.


What did you find was the best way to discuss the diagnosis with Chene? By telling the truth and not running away with the million what if’s


What advice would you give to other FA parents whose child is newly diagnosed? I would tell them to take every day as a gift and make memories. Climb the mountain. Walk on the beach, ride a bike, do a hike…. Don’t change who you are or what you love doing.  If you battle with something, change the way you do it……


How has(have) your twins inspired your life? My girls are my strength.  Their faith is admirable. They are always giggling and despite their circumstances, they always see the positive.  



What is one way FA has POSITIVELY affected your life We found out that we are much stronger than what we ever imagined. Although it’s not always easy if you stay on your knees you can cope with anything.


ChristinHaun mtc sig 16