Name: Sienna Helms
Age: 18
Where do you call home? Missoula, Montana
What is a current goal you have with your education? I’m a freshman in college, majoring in pre-radiologic technology. I’m hoping to become a cardiac sonographer and potentially work within FA, looking at the heart!
Who do you live with? I live with two roommates
What’s a typical day for you? I go to school, work, and then sometimes hot yoga or hanging out with friends, family, and my dogs!
How long have you known you are living with FA? When and how were you diagnosed? I have been living with FA for over 16 years. My brother was diagnosed with FA at 6, and my parents decided to test me too.
Are there any others with FA in your family? My brother, Dylan Helms
Describe an adaptation and/or transition you have had to take due to living with FA. I am still able to walk, but I have to take multiple breaks when walking for more than 30 minutes. I also hold on to something when I stand as I tend to sway back and forth.
What do you like to do to stay active and what type of exercises work for you to stay strong? I use my recumbent bike, do modified hot yoga, and just try to get outside for quick walks as much as possible!
Do you have any hobbies or special interests? I love my dogs, so I play and interact with them a lot! I am also big on true crime so I read and listen to lots of podcasts.
What is a good trick to make daily life easier? Life isn’t a competition! Go at your own pace and don’t compare yourself to others.
When FA gets you down, what do you think/do to feel better? I always try to think about the things my body still allows me to do, rather than what it doesn’t. I’m still breathing, I can still laugh and smile, and I can most definitely continue living life to the fullest.
What is one way living with FA has POSITIVELY affected your life? Having my FAmily has impacted my life in more ways than I can describe. I am so unbelievably lucky to know a group of such remarkable people, and while our situation is unfortunate, I’m so glad to know everyone in the community.
What is a favorite motivational quote of yours? “When you give joy to other people, you get more joy in return. You should give a good thought to the happiness that you can give out.” —Eleanor Roosevelt
What piece of advice that someone with FA has given you that encourages and inspires you? Kyle Bryant said “Life is about how we react.” And I have been living with that in the back of my head for many years. I feel like it has made me a much more gracious and empathetic person, and really made me grasp that it’s everyone else’s first time living, too.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? It’s okay to feel all the emotions. It’s okay to be sad and angry. But it’s so important to also know it will be okay. Our FAmily is an indestructible bond that will always be there to support and lift you up, and you really are never alone.
What is the first thing you want to do when a cure/treatment to FA is found? I want to have a huge get-together with all of my friends and family, and have a big cake!
“I have FA but FA doesn’t have me.” What does this statement mean to you? This statement to me means that while it is good to acknowledge FA and the baggage that comes with it, it does not make me who I am. With or without it, I have qualities that are deeper and truly make me, me.
How do you live your life in the face of adversity? I push through the tough and slow down in the good. Life is full of highs and lows, and what gets me through the lows is appreciating the good and knowing it will always come back.
Tell us a little more about you. I’m a member of Alpha Phi here at the University of Montana, and I love it! I also love going to the lake during the summers and swimming, tubing, or just snacking on the boathouse with friends!
Interview by
Noah Griffith