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Stories of NF: Megan B.

By November 6, 2019December 5th, 2023NF2-SWN, Story of NF

My family and I had just returned from a beach vacation. My children were playing with play-doh at the kitchen counter while my husband and I did chores. It was such a normal day, and we’d had a thousand others just like it… until I felt a horrible sensation rip through my arm. I didn’t know it at the time, but I was having the first of many partial seizures. I remained conscious until the pain subsided, and then was rushed to the hospital to learn I had 17 meningiomas, 1 acoustic schwannoma, and 6 ependymomas. It was June 24, 2019 and the first time I heard the word neurofibromatosis; I was diagnosed with NF2.

Living with NF2 means more doctor appointments and MRIs than life before NF2. It means living in constant fear of what tomorrow could bring. But because of this diagnosis, I also appreciate every day more than the last, and understand just how precious life really is. My future is unknown because of NF2, but I’ve never been more certain that it is worth living.

I am a mom to two young boys (ages 2 and 5). I feel as though it’s not very often a mom gets the opportunity to show her children what strength and courage looks like. I do. So, I show them every day. They go to doctor appointments with me, hold my hand when I get my blood drawn, and are protective of me (and my head). My 5-year-old wants to be a doctor now; he wants to cure his mommy.


This is my story, and it’s not over yet.

I wish I could have healing powers to fix my body without surgical intervention.

Favorite song 
Don’t Give Up On Me by Andy Grammar