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FARAFARA Cure FA

The Swaney's

Swaney KidsName Dawson Ryker Swaney

Age 15

Where do you call home? Pendleton SC, "where the blue ridge mountains yawn its greatness and the tigers play." I live in one town over from Clemson University, National Football Champions.

Education: 10th grade

Who do you live with? I live with my parents, sister and my 3 lizards (Taz, bearded dragon, Flash, a leopard gecko, and Speck, veiled Chameleon). I also have my service dog, Otis, my sister's service dog, Piper and our family miniature poodle, Bear.

What is a typical day for you? A typical day is high school followed by Crossfit.

How long have you known you are living with FA? I knew something wasn't exactly right since I was 7 years old (or a little younger). Kids asked why I was running so slow and with awkwardness. The actual diagnosis came when I was 9 years old. My mom took me to the doctor because I had a bad fall and that led to a visit to a neurologist, who identified the problem.

Are there any others with FA in your family? My younger sister, Morgan, has also been diagnosed with FA.

What do you like to do to stay active and what type of exercises work for you to stay strong? I enjoy adaptive CrossFit. The best part of CrossFit is it gives me a place to belong and a daily obligation CrossFit is a challenge but a lot of fun. It is something we do as a family.

Do you have any hobbies or special interests? When I am home, I love to play video games on my PS4, my computer and I love board games too. I also like to fish and hunt. I am a part of The Outdoor Dream Foundation that helps children go on amazing hunts and outdoor experiences. I have even been to Wyoming. I have hunted deer, boar, turkey, and duck.

When FA gets you down, what do you think/do to feel better? I get sad sometimes and I try to avoid those days by playing games or watching YouTube to get my mind off of it.

Tell us a little more about you We travel back and forth to the University of Florida for the biomarkers trial. At the age of 12, I began my first clinical trial, The Steadfast Study. I had hand controls put installed on a car so that I can start driving with my permit.

Interview with Dawson's Sister

Swaney Collage 2Name: Morgan Paige Swaney

Age 13

Where do you call home? Pendleton, SC

Education: 7th grade

Who do you live with? I live with my Mom, Dad, brother and my 3 dogs.

What's a typical day for you? My typical day consists of school, home, homework, work out at CrossFit, shower and help with dinner. It is not always in that order.

How long have you known you are living with FA? I have known about my FA for 8 years but was not diagnosed until 4 years ago.

Are there any others with FA in your family? My brother has FA too. It is nice to have someone close to you that relates. I'm not saying we always get along...we always have an understanding for one another.

What do you like to do to stay active and what type of exercises work for you to stay strong? I stay active with CrossFit. I work with my service dog, Piper, every day. I wheel myself mostly and try to do most things myself. It always takes a little longer, but I figure out a way.

Do you have any hobbies or special interests? I love to cook and do CrossFit. I love to shop, watch YouTube, I like old cars, love to hunt with Outdoor Dream Foundation and I also love doing my makeup.

When FA gets you down, what do you think/do to feel better? I let it out, I cry. Sometimes I talk about. There are good things though. I think about all the organizations I am working with and how FA has allowed me to be a part. I speak and advocate for people. It opens a lot of pathways for me as well.

Tell us a little more about you. I am in a biomarkers study at the University of Florida. I speak and give presentations when I am given the opportunity. I am in Betaclub, Palmetto's finest, and represent the MDA as a 2019 SC Goodwill Ambassador.

Interview with Dawson and Morgan's Grandmother

Swaneys collageName: Juanita Jolley

Relation to FA patient(s): Grandmother

What quality or trait has been brought out the most in your grandchildren and you despite living with FA? Compassion and Awareness: Enhanced awareness of anyone different and ensuring they are treated with normalcy and respect.

What did you find was the best way to discuss the diagnosis with your grandchildren and daughter? I have a close relationship with my daughter and can talk openly with her. We have grieved together, cried together, laughed together, and are working through this diagnosis a day at a time. My grandson, Dawson, and granddaughter, Morgan, have FA. My grandchildren will share their thoughts and feelings with me from time to time. I wait for them to bring up the subject and then we talk when they are ready.

What advice would you give to other grandparents of are newly diagnosed family members? Give yourself time to adjust away from your family members with FA; then be supportive and positive with them when you are ready. Some days or moments can hit you before you know it and you will have to work through that moment. Learn all you can. Be there for them and help wherever possible. Live life with vigor and do everything you can while you can.

How have the children inspired your life? My grandchildren with FA are extremely hopeful and positive. They are troopers and make the best out of every day. FA doesn't define them; they define what they do. My grandchildren with FA inspired others which make me extremely proud of them.

How have you been encouraged for their future living life with FA? Getting involved in FARA, MDA, Outdoor Dream Foundation, the clinical trials and research team at the University of Florida, and other FA events have been educational and bring possibilities for the future. Meeting like kind of people and sharing experiences are helpful. My grandchildren met an FA young lady that worked out, did rock climbing, drove a car and more. This young lady inspired my grandchildren to do more, so they took up cross-fit training with enthusiasm. They are excited to work out and look forward to it each day. I'm noticing a difference in their strength and ability to move. Another uplifting and exciting event has been acquiring service dogs and having the adventures to be part of the training with the Service Dog Institute and Dog Trainers Workshop. The service dogs provide unconditional love and help them each day with daily routines. The bond is unbelievable and gives me a peace of mind knowing someone is always by their side when they need something.

What is one way FA has POSITIVELY affected your lives? My daughter and grandchildren are an inspiration to me and others every day. They have taken on this diagnosis with determination and decided to be the best they can each day. Their motto is to "Live in the Moment."

 ChristinHaun sig 16

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