Kate 2Name: Kate Walker

Age: 15

Where do you call home? North Louisiana

Education: 10th grade

Who do you live with? I live with my parents, Rachel and Jason, and my dog, Ellie Mae.

What's a typical day for you? Since it is summer right now, my routine is different than it would be during the school year. I usually wake up around 9 or earlier and lay in bed for a while. I work on my website or my YouTube videos during the day. I try to find time to do some sort of exercises. Some days I spend time with friends, ride my trike, or watch TV. It depends on how tired I am that day. There are days I don't get out of bed much, but I try to keep myself motivated. 

How long have you known you are living with FA? I was diagnosed at the age of 12 after a class trip to Washington D.C. There, I noticed that I had trouble keeping up with my friends and at the end of the day, I felt terrible.

Are there any others with FA in your family? No

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to the gym three times a week and use the weights on a pulley system. I struggle with using free weights. I also go to physical therapy once a week. On days that I do not have a workout scheduled, I try to do core exercises at home. I work on full-body strength, but I would say that my top priority is core strength.Kate Collage

Do you have any hobbies or special interests? I love to read, write, and edit videos. I also love working in the FA community.

When FA gets you down, what do you think/do to feel better? FaceTiming with my friends usually helps me feel better or at least get me laughing some. I watch videos that I know will make me laugh or that will inspire me. I also like to talk to fellow FA friends and see how they are doing.

Tell us a little more about you...I am obsessed with being organized and planning out everything. I love to travel and learn about new things. When I get older, I want to be a motivational speaker. I also could see myself doing something in the medical field. I am currently undecided.

Your Names: Rachel and Jason Walker

Relation to FA patient (Kate): Parents

What quality or trait has been brought out the most in the family despite living with FA? We have learned the true impact of grit and perseverance. We try to do more now and not put things off. We also have learned to look for joy in things every day more than we used to.

Kate FamilyWhat did you find was the best way to discuss the diagnosis with her? We tried to be upfront and honest without being negative. Answering questions, but trying not to look too far into a future that we can't predict.

What advice would you give to other families who are newly diagnosed? Reach out to the FA community. Get involved. Find the people around you who will love your child and support your family. Stop occasionally and make sure your priorities are in line.

How has Kate inspired your life? Kate's determination and ability to see past her diagnosis is a lesson to us. When we're feeling frustrated or tired, we look at her and see what she's facing, with a positive attitude for the most part, and it's easier to shake off our own issues and move on.

How have you been encouraged for her future living life with FA? We believe there are lots of things to be encouraged by. Aside from our own determination for Kate to have a full life, the world is slowly becoming friendlier for those with a disability. Technology is providing ways to keep our kids engaged in life. And of course, FARA is out there keeping the fires burning for a treatment for FA.

What is one way FA has POSITIVELY affected your lives? We believe FA has affected our lives more positively than negatively. Of course, it stinks and we wish we didn't have to travel this road. However, the relationships we've made, the way we've learned to live and love, the compassion we've seen and developed...all these things have made and continue to make our lives better.

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