Meet Claire

Hi there,

My name is Claire.  I’m sixteen years old, and I live with my mom and my sister and my cat outside of Chicago, IL.

I have Aicardi-Goutiere’s Syndrome, Type 5.  My family learned that I had AGS last summer after not knowing what caused me to be the way I am for fifteen years.

I am a very happy girl!  I am a sophomore in high school, and I love school, especially my teachers and friends.  I use a power wheelchair to get around (watch out for your toes!) and an assistive communication device to communicate.  Outside of school, I see a physical therapist 2x/week, and an occupational therapist and a speech therapist each once.  I also check in regularly with an orthopedist, an endocrinologist, a gastroenterologist, a neurologist, and an ophthalmologist.  I’ve had a few surgeries and other hospitalizations over the years.

My three favorite things are music, food, and people.  I am fortunate enough to be able to eat by mouth, and I drive to the refrigerator and ask for ice cream every day.  Vanilla is my favorite!  I am sometimes like a typical teenager and listen to Taylor Swift and Katy Perry, and I also love musicals like Hairspray and Once Upon a Mattress.

More than anything else, though, I love the people in my life.  When one of my favorite people is coming over, I drive to the front of my house and wait at the window.  When they come in, I brighten their day with a great big smile!