Meet Dylan Helms

Name: Dylan Helms

Age: 21

Where do you call home? Missoula, Montana

What is your education? Currently enrolled in the Media Arts program at the University of Montana.

Who do you live with? I spend three days a week at home with my parents and sister and 4 days a week at my apartment with a caregiver and two friends.

What’s a typical day for you? I go to school at the University of Montana, work out, play adaptive video games, spend time with family and friends and create content for a YouTube channel.

Duration of FA: Diagnosed with Friedreich’s Ataxia at the age of six.

Family with FA: My sister, Sienna, also has Friedreich’s Ataxia.Transition to wheelchair: Began using a walker in third grade, full-time wheelchair user by fifth grade.

Staying active: I enjoy working out to stay strong. I go to occupational therapy once a week and work out at the University of Montana’s physical therapy department twice a week.

Hobbies/Interests: I enjoy traveling, going to my cabin in the summer, hanging out with my friends and family, adaptive gaming, role-playing games, adaptive kayaking, paragliding, and creating YouTube content.

Trick for daily life: Being able to laugh at the difficult things in life.Coping with FA challenges: When I am having a challenging time, I try to embrace the FA community. It helps me feel like I am not alone.

Positive impact of FA: Having FA has shown me how strong I can be. I’ve also found meaningful friendships with people who I might not have met if I didn’t have FA.

Motivational quote: “Once we truly know that life is difficult… then life is no longer difficult.” Thanks Uncle Paul.

Inspiring advice from someone with FA: “Your disease does not define you.” -Kyle Bryant

Advice for newly diagnosed: Embrace the FA community and don’t be afraid to ask for help. Life becomes more manageable.

“I have FA but FA doesn’t have me.” What does this statement mean to you? Accept life’s challenges and live fully despite adversity.

More about you: I like Pina Coladas and getting lost in the rain


Interviewed by

Seth Holm