Name: Amelia Hamilton
Age: 10
Where do you call home? Ohio
Education: Grade 5
Who do you live with? I live with my mom, dad, my older sister, a cat and two bunnies.
What's a typical day for you? I love to sleep in! But most days I wake up earlier and if I get dressed, eat breakfast,and brush my teeth fast enough I get to play Super Mario with my parents before I get on the bus. I go to school where my favorite class is math and then come home, feed my bunnies, play, do my homework, go to the gym and then eat dinner while we watch the Great British Baking Show. Bedtime usually involves reading with my mom.
How long have you known you are living with FA? My whole life. But I was told what I have been experiencing for many years was caused by FA when I was eight.
Are there any others with FA in your family? Nope, just me.
What do you like to do to stay active and what type of exercises work for you to stay strong? To stay strong and get exercise I like to go to the gym, I go to PT, I’m in swimming, gymnastics and ride my trike.
Do you have any hobbies or special interests? I like to do robotics at my school. I like to color, paint, and sew. I love animals and anything cute. Minecraft is my favorite game.
When FA gets you down, what do you think/do to feel better? When I get upset, I like to play with kinetic sand, make slime, and spend time with my family. I also like to spend time with animals.
Tell us a little more about you… I really like sushi, I like to watch Just Add Magic and then cook with my mom. I love to play with toys and the piano.
Your Name(s): Elizabeth and Ryan Hamilton
Relation to FA patient: Parents
What quality or trait has been brought out the most in [The non-FA patient(s) and/or you] despite living with FA? We have learned to not take life for granted, to be intentional with our choices and to surround ourselves with a community of support. Being vulnerable is a strength. When Amelia was first diagnosed, we had so many people reach out in their own way to support us and have continued to be with us during this journey. We have learned how to ask for help and we are so grateful to all those who show up for us.
What did you find was the best way to discuss the diagnosis with her and/or another guardian/Family member? Amelia had been tested and seen by specialists for years before we got an answer. When we finally had one, it came with some closure that we had been seeking. We found the best way to discuss FA with Amelia was by showing her positive role models who have FA, by explaining what it meant for her now and what we would do as a family to help support her. We also remind her of all the people in her life who love and care about her. We are all in this together.What advice would you give to other parents whose child is newly diagnosed? As parents, we want to fix things, make smoother paths for our kids so that they do not struggle. But no parent gets to do that and with FA, that reality can be really hard to face. To quote our favorite doctor, “we do not parent in the past or in the future, we can only parent today, so stay present”. It is something we repeat a lot.
How has she inspired your life? Amelia is walking determination; she doesn’t give up. She loves to laugh and make others laugh. Her smile can light up a room.
How have you been encouraged for her future living life with FA? We try not to think too much about the future. For us, we really try to just stay in the present, push Amelia to be her best self. We enroll in all the studies we can and take part in clinical trials too. We do that because that is how we will help carve out opportunities for a treatment or cure for FA. We fundraise when we can and advocate for the needed changes in the ways our nation looks at rare disease. We remind Amelia that she is part of a bigger community and that is a powerful thing.What is one way FA has POSITIVELY affected your life(lives)? We have met so many incredible people in the FAmily. We have talked with dedicated researchers who are approachable but insanely knowledgeable. We have grown as parents and as people in ways that we did not know was possible. We do not want to sugar coat the realities of FA, this is not an easy journey, but the path we are on we know that we do not travel alone.
Interviewed by
