Skip to main content

Stories of NF: Madi & Ben

I was diagnosed in 2020 at the age of 23. So much frustration followed my diagnosis, as I was only diagnosed when I went looking for a second opinion. I was frustrated with all of my doctors growing up AND my dermatologist for not catching it sooner.

A woman with blonde hair is holding a sleeping baby against her chest. She is smiling softly at the camera, and there is a plant in the blurred background.I recently (end of 2022) gave birth to my son who also has NF1. He’s got a great personality! Together, we have joined the local community of others like us. I try not to focus on how NF can negatively impact me. Only focusing on the positive. I recently created an instagram account to share our story.

At 23, I was not expecting to be diagnosed with this. My NF was a genetic mutation so I was the first in my family. My best moment was having my husband support me through it all.

In my free time I have my side business as a photographer! Most of all I try to spend most if not all my time with my family.

Favorite Song
Suddenly I See by KT Tunstall

Dream Superpower
Speed or extra arms. Be the best mom I can be

Favorite Food
PASTA

Fun Fact
I eloped in 2020 at a rest and pray on the side of a highway