Hi! My name is Vivi and I am 10 years old. I just started 5th grade and I’m very excited to meet my teacher and new and old friends at school. I have NPC and the doctors told my parents that by 7 I won’t be able to walk, talk or do anything a normal kid could do.

But now, at 10 years old, I  can walk on my own, I can play with my friends and I can do all my favorite girly things:  like play hair salon, go shopping , swimming and cheerleading. I can do all this because since I was 4 years old I was on one experimental treatment and then another one for NPC. I had to stop taking my first medicine because of some of the things going on with FDA and the last medicine company.

It was really scary. All of a sudden it got a lot harder for me to walk and I started falling down all the time when I would laugh or feel really happy, this is a symptom of NPC. It's been better now that I was able to start a new medicine, but now this one might get taken away, too. I’m the living proof that these treatments work.

My mommy says FDA wants to take everything away from me, please tell them to let me live my fairytale life and allow me to be the fancy walking, talking, dancing princess that I want to be.

Thank you for helping me and my friends like me!

Vivi