Ali Didier

In my hero’s own words: “June 15, 2007 is the day that changed my life forever. I was 10 yrs old and was told I have NF2. The tumor in my ear was really big and they said there was just a small chance of saving my hearing. I remember thinking, how could this happen to ME!? I’ve had 3 surgeries in 5 years to remove: the tumor in my right ear (where I lost the hearing), one behind my nose (where I lost my sense of smell) and one on my spine. As my hearing in my left ear began to decrease, I became the youngest of 7 candidates to enroll in a study at NIH which required me to fly to DC every 3 weeks for 18 months to try a chemo drug. Unfortunately, this chemo hasn’t slowed the tumor growth so we have to try something else, especially since 2 of the tumors I’ve had removed have grown back! But my advice to anyone who is diagnosed with NF is no matter what, be happy, do what you love, and live your life to the fullest, I know I am.” And THAT is why my daughter Ali is my NF hero!