Stories of NF: Madeleine L.

I don't remember much. I was just about two. But I remember growing up and going to the hospital once a year to get MRIs of my brain and spine. The MRIs were over six hours long. Sometimes, I would be sedated, but as I got older, they didn't want to do that. I remember having a possibility of having scoliosis and what that would look like to fix that. Luckily, being on the swimming team, I was able to adjust my scoliosis. I remember feeling new bumps around my head and spine and telling my mom that we had to make an appointment with the doctor.

It impacted my life by having weird spots of pain throughout my body. Headaches have a different type of pain because of the lumps on my head. Wearing specific clothing hurts the bumps on my back. I have a plexiform tumor on my thigh that hurts frequently when there's pressure on it. I've had to adjust the way my body looks in my mind.

A defining moment I had in my NF one journey was when I was working at a hospital, and I was able to help a mother and her child find the correct waiting room for their appointment. I found out that the daughter and I had the same diagnosis of NF1. I was really fortunate to be there for the mom and also to talk about my diagnosis with someone who could understand.

I work for Alex's Lemonade Stand Foundation for Childhood Cancer. What makes me happy is painting, hanging out with my friends and family, going on hikes with my dog, and watching movies.

Favorite Song
Long Live by Taylor Swift

Dream Superpower
Time Travel

Favorite Food
Pasta