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FARAFARA Cure FA

Luke and Sandy

Name: Luke Cooper

Age: 12

Where do you call home? I live in St. Augustine, Florida with my dad, mom and three brothers, Kade 11, Brock 6, and Kolt 2.

What grade are you in? I'm in 7th grade at R. J. Murray Middle School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed at age nine in December 2011 after testing at Wolfson's Childrens Hospital in Jacksonville, Florida.

Describe your transition from walking to walker to wheelchair. I can still walk unassisted, but do use a walker at school for balance and sometimes a wheelchair. My teachers and friends at school are very helpful and supportive.

What do you like to do to stay active and what type of exercises do you do to stay strong? I like to play basketball and football and ride my trike to stay active. I do get tired easily, but I love to relax and play video games! One thing that keeps me strong is physical therapy at school and a great team of guys at my chiropractor's office who keep me in alignment and stretched and strong.

What's your most comfortable pair of shoes to wear? My Nike basketball sneakers!

Do you participate in adaptive sports of any kind? I don't participate in any organized sports, but I do ride a trike, and hope some day to become involved with Ride Ataxia like Kyle Bryant. I met Kyle at the SwingAway at FA fundraiser this fall!!

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I like being able to participate in fund raisers to help other people.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Just stay positive. It's hard sometimes and frustrating, but I keep going. I will keep going!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? When a cure is found, I really want to be an athlete, especially play on a basketball team and go on to play college basketball (at Alabama or Kentucky) and then to the NBA!!!!

"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? "FA doesn't have me!" I try everyday to be positive, not really think about (or talk about!) having FA all the time and do the best I can. I believe there will be a treatment and a cure!!!!

 

Strong support systems are so important! The FA Community is filled with some of the most incredible supporters. Sandy is Luke's grandma (aka "MawMaw"). Read Sandy's interview below. With such a supportive and encouraging family foundation, it's easy to see why Luke is so positive and happy!

What quality or trait has been brought out the most in Luke despite living with FA? Luke never gives up. He is concerned about others worrying about him and frequently says, "I'm okay and I'm going to be okay!"

 

What was Luke's reaction and understanding of the diagnosis when his parents explained it to him? I remember when Greg & Alison, Luke's parents, sat down with Luke and Kade, his brother. We'd all been so heartbroken with such a diagnosis and of course, the dread with how Luke would react. After the disease was explained to him, he pondered a few minutes and said, "Okay… now can we go out to eat?" Even then I knew Luke wouldn't react because he didn't want anyone to worry!

What advice would you give to other grandparents and extended family whose loved one was just diagnosed? What works for me is praying; being available, having fun, and believing and being grateful for the cure that I know will come. My faith carries me minute by minute. And, remembering to live today… nobody is promised tomorrow. I choose to rejoice in today and be thankful!!!!

How has Luke inspired your life? His kind, sweet heart and spirit carry us. He's extremely bright and so well loved. He'd been a student at Crookshank Elementary School in St. Augustine, Florida since he was 4 years old. We are full of gratitude with the love and care shown to Luke both by the staff and students before and after his diagnosis. At Luke's sixth grade graduation ceremony, the night ended with the special award called The Principal's Award for outstanding student. I still cry when I remember the cheers, standing ovation by his fellow students when the principal announced Luke Cooper! My life is so very blessed by this young man and my six other grandchildren. I fervently pray daily for my family, and especially that Luke's three younger brothers are never affected by this terrible disease. FA doesn't always show up in siblings, but you can't be naïve about it either.

How have you been encouraged for Luke's future living life with FA? Participating in fund raisers and the ever-encouraging news about how close we are to a cure! It will happen! Luke's dream has always been to be an athlete. Meeting Kyle Bryant in October was such an encouragement to him and he's excited about possibly becoming involved with Ride Ataxia! Of course, he still believes to one day play in the NBA. He loves all sports, but especially basketball. 475What is one way FA has POSITIVELY affected your life? I've become so much more aware of hurting, sick people in the world— of being so much more grateful and compassionate. FA has made me realize my walk as a Christian has prepared me for such a time as this.

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. Lealan

 


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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