Stories of NF: Alexa D.

I don’t remember being diagnosed, my mom says I was 2 months old. She took me to the doctor and asked him why I had spots all over me. The doctor freaked out and sent us to the genetics lab at our hospital. They said I had the first signs of NF – cafe au lait spots. I have hundreds now. They did not know much and just said we will watch for other signs.
They didn’t say that the signs could be tumors under the skin and in my organs, they didn’t tell us that it could be a giant brain tumor that turned cancerous. They didn’t give us any information and my mom trusted them. She shouldn’t have; my mom never heard from them again.

One day Mom said I stopped learning to walk, dropped to the ground, and my hand was clenched to my chest (like a stroke victim) and I was dragging my left leg as I crawled.
She brought me in to my pediatrician and we were told to rush to the hospital that they would be waiting for us with an emergency MRI. I ended up with a giant brain tumor the size of a Granny Smith Apple which pushed my brain all the way to the right side of my skull, which paralyzed my left side. My hand and arm never came back and walking has never been the same. After doing emergency brain surgery and getting the results back from the many places they sent the tissue, they said that it was a cancerous brain tumor that spontaneously mutated out of thin air and it was a new strain! Which made it nearly impossible to treat.

Mom always says if we were just given options, and our genetics lab actually knew more about NF, I might have had the correct surgery to catch it before it got too big and now 15 years later, after 5 states, 10 medical trials, and 11 brain surgeries, I’m blind and still fighting for my life with no more options after this trial ends.

NF impacts every aspect of my life. I have major life-threatening endocrine issues so bad that my sodium levels put me in the hospital at least once a month. I won’t be able to have children, I probably won’t meet somebody and get married since I’ll be living at home forever. There’s nothing in my town that is anywhere for me to go for support except for the cancer world like candle lighters. Before I went blind I wanted to be a chef; I could have been a chef with one arm, but then my brain went crazy and then I went blind now my dream is shattered.

I had to learn Braille. It’s just like learning to read all over again from kindergarten level but my short-term memory makes it impossible, so I will never get past my kindergarten level of my new life. I have to use an abacus because I can’t see but I love math. But even though I’m going through all of this…

I never ever give up! I have fought my cancer and NF1 for 15 years and I am only 16 years young. I will never give up and I want to find a cure for other kids. I want other kids and adults with NF to know if they have NF they are not alone, they do not need to hide. They are loved and with the right support and right research that a cure can be found!

This was written by my mom but I helped her with the ideas of how I feel now.