Pt. Story - Olivia & JT Hernandez

June 01 2010

Posted in Personal NF2 Stories

My name is Olivia, and I am the 4th person to be diagnosed with NF2 in my family. Living with NF2 is second nature to me. I lost my Grandmother and Uncle to the disease as a child, and then my Mother just 5 years ago. Around the same time my son JT was diagnosed as well. I am Deaf, and have had a lot of surgery resulting in daily challenges. A lot of people would define me within this context, but I instead choose to let it only be one part of me. I am a Mom, a wife, a marathon runner, a student, a writer, and most importantly I am happy. There are so many medical advances happening right now, and if NF2 has taught me anything it is to always remain hopeful. We have a lot of reason to Hope.

This is JT, he is 7 and was diagnosed as a baby with NF2. He has tumors in both of his eyes and is blind in his right eye. He loves to dance and is great at Taekwondo. Every 6 months he has MRI’s and we make sure he is receiving the best of care. JT is very bright, and started learning sign language as a baby. Now he is able to communicate with his Mom in spite of her hearing impairment, and has even taught a few of his friends some signs as well. JT is 7 and can tell you what Neurofibromatosis is, what a tumor is, and why he cannot see out of one eye. He can also tell you how to beat Super Mario Bros on Wii and how to do a spinning back kick. He is just a kid, who happens to have NF2.