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FARAFARA Cure FA

Ryelee and Mindy

Name: Ryelee Victoria Burris

Age: 8 years and 11 months.

Where do you call home? I live in Forney, Texas and go to school in Kaufman, Texas.

What grade are you in? 3rd grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having problems when I was 3, but was diagnosed with Guillen Barre Syndrome. My mom took me to a neuromuscular specialist in Houston, TX when I was 5. He did the genetic testing and on May 25, 2011, I was officially diagnosed with FA.

Do you have any known family history of similar symptoms to FA? No.

Describe your transition from walking to walker to wheelchair. At first I just walked a little different. I began using a walker, which my mom would decorate with pink, zebra and cheetah duck tape to make it pretty. When I went to 1st grade the campus was really big so I got an electric wheelchair so I wouldn’t get tired but only used it for outside the classroom. In 2nd grade, I really began using my electric chair more, especially at school. I have a manual wheelchair too that I use when I am at home and sometimes when I am out in the community. I now use my electric chair full time, especially at school. I only take my electric chair home on the weekends or if we have something to do, like cheer or baseball. My electric chair supports me better for those activities.

What do you like to do to stay active and what type of exercises do you do to stay strong? I go to physical, occupational and speech therapy twice a week at Excel Pediatrics in Rockwall, TX. I walk on the treadmill and have a gait trainer at home I use too. I also have a trike that I use to ride around outside to exercise my legs.

Do you use any tech aides? if so, what works or hasn't worked for you? I use a tablet at school to help me do my work.

What's your most comfortable pair of shoes to wear? I love my boots with fur.

Do you have a diet plan you like to follow, and why? I eat pretty much what I want. I try to drink lots of fluids to keep me hydrated. Do you participate in adaptive sports of any kind? What do you do for fun? CHEER, CHEER, CHEER!!!! I love to cheer. This year, I was the Co-Captain for my Pee Wee team. I also play T-ball, power soccer and bocce ball.

I used to be a ballet dancer. Even when I was just using my walker, I was still able to dance. When I transitioned to my wheelchair, it made it a lot harder so I stopped doing dance. I love hanging out and spending time with my friends.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I think that other people see me doing all the things that I do even though I am in a wheelchair and that it teaches them not to judge people just because they are different.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Stay strong and keep fighting. Always remember Phillipians 4:13 “I can do all things through Christ who strengthens me.”

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Do a back flip and be a dancer again.

"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 believe I can do anything anyone else can do. I might have to do it differently, but I can still do it. FA doesn’t stop me from being me.

 

Strong support systems are so important! The FA Community is filled with some of the most incredible supporters. Mindy is Ryelee's mom. Read Mindy's interview below. With such a supportive and encouraging family foundation, no wonder Ryelee is so joyful and full of life!

 

What quality or trait has been brought out the most in Ryelee despite living with FA? Her spirit and determination. She continues to do things just like other kids and she never gives up regardless of how hard it is for her. She teaches us each day how to be strong. imageWhat did you find was the best way to discuss the diagnosis with your daughter? We have always spoken openly and honestly to Ryelee about this disease. We include her in any decisions we have to make regarding her. We felt that this was important so that she can self advocate and teach others about FA.

What advice would you give to other parents whose child was just diagnosed? I would tell them to make sure they have good doctors to help them. Surround yourselves with people that love you and your child. I also would tell them to not let the disease define their child. The love for your child never changes. Your hopes and dreams for your child are still there, they just might look a little different. We have been very lucky to be surrounded by our friends and family, who support and love Ryelee so much.

How has Ryelee inspired your life? Ryelee never gives up. When we are overwhelmed and ready to cry, we just have to look at the way she lives her life and her beautiful spirit and you just can’t give up when you see that.

How have you been encouraged for Ryelee's future living life with FA? We are excited about all the awareness and number of trials that are currently going on. We believe that a cure for FA will happen.

 

A very BIG thank you to all our parents, brothers, sisters, grandparents,
aunts, uncles, cousins, friends and caregivers!!

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

 


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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