Amelia
Name: Amelia
Age: 9 years old
Education: Third grade.
What is your favorite subject in school? I like art and music.
What do you want to do when you grow up? I want to be a vet or own a capybara cafe.
Who do you live with? I live with my two brothers, Wyatt and Ethan, my mom, my dad, my three dogs, my two birds, and my guinea pig.
What is your favorite memory with your family – a holiday, vacation, or funny moment? My favorite memory with my family is going to Disney and riding all the roller coasters.
What is a typical day for you? I wake up and go to school. Then, I like to play outside with my friends and play with my animals.
How long have you been living with FA? I have had it my whole life, but I’ve only known about it for one year.
Are there any others with FA in your family? No.
Do you have any hobbies? I love horseback riding, playing with animals, crafting, drawing, and swimming. I also love to travel and just visited my twenty-second country, Japan!
What do you want other people to know about FA? It’s much harder than you think.
Laurel
Name: Laurel
Relationship to Amelia: Amelia’s mother
What quality or trait has been brought out the most despite living with FA? Her strength, humor, and resilience.
What did you find was the best way to discuss the diagnosis with her? We give her information in chunks and try not to overwhelm her. We answer questions as they come and try to create a safe space for open communication.
What advice would you give to others who have been newly diagnosed? Life isn’t over. What starts as the most devastating news of your life becomes the reason you started living it wholeheartedly. There are still so many beautiful moments you have yet to experience and you will grow to appreciate them even more. There is a huge shift in priorities. The little things that once caused stress lose their weight. You let go of what doesn’t matter and hold tighter to what does.
How does Amelia inspire your life? I am constantly inspired by Amelia’s strength. Watching her live with Friedreich’s Ataxia has forced me to redefine strength from something loud and physical into something internal and indestructible. I used to think of strength as the ability to carry a heavy load or run a long distance, but she has shown me that the most profound power is in resilience and will. It’s in quiet, daily decision to keep going even when your body does not want to cooperate. She’s taught me that the hardest circumstances don’t just test your strength, they create it.
How have you been encouraged for her future living life with FA? I am deeply encouraged by the vibrant FA community and the hope that they bring. Seeing other families advocate with such passion and determination reminds us that we are not alone. This collective drive to find a cure creates a powerful sense of solidarity and gives us the comfort of knowing that an entire global network is fighting alongside us for the future that she deserves.
What is one way FA has POSITIVELY affected your lives? The perspective shift is the silver lining of FA. Amelia challenges us to strip away the superficial noise of life and focus on what is truly important; love, experience, and connection. FA has also taught our family the invaluable lesson of living entirely in the present. It forces us to slow down and truly appreciate the time we have together, finding joy in the small, everyday moments. This mindset has deepened our bond and ensured that we never take a single day for granted.
Interview by
Christina Cordaro
Edited by
Bree Lessard