Name: Tyler
Age: Seven
Education: Second Grade
What is your favorite subject in school? Science, because I like to invent things.
What do you want to do when you grow up? I want to be in the Army and make equipment for the tanks. I want to discover a way that people in wheelchairs can be in the military.
Who do you live with? My parents and my sisters. I have 5 sisters, and I am the youngest.
What is your favorite memory with your family – a holiday, vacation, or funny moment? My family went on vacation to Lake Gaston with my grandparents, aunts, uncles, and cousins for a week. We went tubing on the river and went night fishing.
What is a typical day for you? I wake up and take my medicine, then eat breakfast. I watch my tablet before if I have time before I get dressed and head to the bus stop. At school I must ride the elevator because stairs are hard. My favorite part of school is recess because we get to play “zombie tag” which I invented. When I get home from school, I have a snack and play for a while then have dinner then get ready for bed.
How long have you been living with FA? I was diagnosed when I was five.
Are there any others with FA in your family? I am the only one, but one of my sisters is a carrier.
Do you have any hobbies? My favorite hobby is building legos. I do not like the instructions, I like to think of my own idea and build new things.
What do you want other people to know about FA? Sometimes it makes things more difficult. I have a tough time with stairs, I trip a lot. I can do what everyone else can do, it just looks different.
Name: Amanda
Relation: I am his mother
What quality or trait has been brought out the most despite living with FA? I believe it has shown me how strong I am and just how far I would go for my children.
What did you find was the best way to discuss the diagnosis with him? As far as talking with Tyler about it, we are still navigating that process. He is only 7, so some of the things I believe we will discuss in the future. We try to make everything fun for him, he was able to pick out his wheelchair and it has light-up wheels, so he thinks he is the coolest. We knew of someone who wrote a children’s book explaining FA to kids, so we have gotten lots of copies and Tyler has given them to people at school and his sisters to also help them better understand it. I often need to reach out to other parents who have children with FA because there are so many unknowns, and it has helped tremendously when explaining things to him.
What advice would you give to others who have been newly diagnosed? Primarily, take the time in the beginning to be upset and feel each emotion that comes with it. Each case is different, so do not focus too much on questioning when things will happen. There are a lot of FA groups for parents that are incredibly supportive and willing to help walk you through this. Despite living with the disease, your child is going to show you some amazing things.
How has he inspired your life? Tyler inspires me every day! He is still so positive and resilient whenever he faces any obstacles. He does not let FA define who he is.
How have you been encouraged for his future living life with FA? It is difficult because everyone with FA is different. There is no “set time” symptoms will start. We highly encourage Tyler to at least try to do things and if he is unable then we are going to help. Our goal is to teach him life may look different for him but there is nothing he cannot do.
What is one way FA has POSITIVELY affected your lives? That is a tough one. Hearing your child has an illness and there is no cure is devastating. As we have moved forward, I have found it in myself that I love advocating for FA. The more awareness I can bring to it the faster we can find a cure.
Interview by
Jamie Plourde