Story of NF: Emily H.

I was in 5th grade, and I was "sick" at least two or three times a week for about 2.5 weeks. I ended up with the diagnosis of a brain tumor. I had surgery a couple of days later. My neuro team noticed the brow spots (cafe au lait spots) on my body. I had always called these spots birthmarks.

They suggested going to an NF specialist. A few weeks later, my parents & I were in yet another examination room being told news you never plan to hear. I don't remember quite what he did to come to the diagnosis. I just remember he looked at my spots. I was at an age where I could somewhat understand what news like this meant, but not fully. I knew my life was not going to be the same. However, I was not prepared to hear how it could affect any future children I may have.

Through the trials, I have learned how to embrace my NF. I have told my story. I have brought light to facing trials head-on and not giving up. My NF may carry a lot of weight, but it is not strong enough to beat me!

My education is different from that of those I went to school with. While some of my classmates could solve a math problem with ease, it took me just as long to figure out which formula to use. One defining moment was a professor telling me they were proud of me and that they knew I could do it (pass the class).

It has also brought doubts from others. Some people have told me I should not have biological children. Some people have nodded to me, but never been successful. I don't want to say NF has no impact on my future, because it surely does. I do want to have kids, and I know I could pass my NF on to them.

Today, I am a teaching assistant! Which is something I told my IEP team I would NEVER do! I always said I didn't want to work in a school, and here I am today! I have been so lucky to have people in my life who believe in me and never let me give up. They remind me of how far I have come, all that is ahead of me, and the joy I bring!

One thing that brings me a lot of joy is spending time with my boyfriend. He has been an anchor for me. A year and a half before we started dating, I was diagnosed with my third brain tumor, having multiple seizures a day, and we were in the depths of COVID, so appointments were constantly cancelled. He never left, even when I told him I understood if he wanted to.

Favorite Song
"Only One" by Yellowcard

Dream Superpower
Flying because I still don't drive! Ha!

Favorite Food
I love pasta and Chinese food!

Fun Fact
I have this ongoing joke that is literally over 10 years old, that I am Randy Jackson in my secret life.

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Children's Tumor Foundation