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Stories of NF: Olivia

By June 1, 2011December 5th, 2023Awareness

I was diagnosed with NF2 at just 6 months old.  I don’t remember a time when I didn’t know how to say Neurofibromatosis. My earliest memories are of my Grandmother and Uncle, completely wasted away, paralyzed and deaf. My Mom was afflicted as well and I remember sitting in ICU waiting rooms with my Dad for hours every time she would have yet another surgery, and then bringing her home and dealing with the devastating aftermath.  Over the years all three died before the age of 40.

I had my first spine surgery in 4th grade, and my back never quite healed correctly. By high school I had a vestibular schwannoma in the left side of my brain. I had major surgery Junior year, and woke up completely deaf on that side. High school was a blur of cruel kids and bad decisions, by the time I graduated my VS had grown back, as well as another one on the right side.

At this point I began having MRIs every 6 months instead of once a year, and it seemed that every time there were more tumors. Over the years I have had clumps of tumors removed repeatedly down my entire spine, have had Gamma Knife radiation on 10 different brain tumors during 6 different procedures, and had Cyber Knife radiation on 6 spine tumors during 3 different procedures. I’ve had bone removed from my spine and cannot stand up straight any more, I have weakness in all of my extremities, no reflexes, double vision and am completely deaf.

In 2002 against all advice I gave birth to my son JT, who was soon diagnosed with NF2 as well. As complicated as the situation was, he is the best thing I have ever done in my life. I stopped waiting to die and started living for my son. I graduated college, got married, and had my daughter Mica, who is the first person in my family in 4 generations to not have NF2!

I don’t even remember how I first heard about the NF Endurance Team, I ran my first marathon with them in 2009 and have not slowed down since. Being a part of the team has been incredible. I am stronger both physically and spiritually, and I am now a proud Team Captain of the Long Beach NF Endurance Team for the 3rd year running!

As happy as my life is today, NF2 will always threaten my horizon. I want to live to see my children graduate, I want to retire with my husband and grow old next to him, and I know I am not alone. There are a lot of us all waiting for that cure, and I will never give up hope that I will see it in my lifetime.

Ed Note: The Children’s Tumor Foundation, in conjunction with the Mayo Clinic, is excited to be offering a Health Fair for individuals living with NF2 and Schwannomatosis at this year’s NF Forum.  Click here for more information on this opportunity to receive an evaluation from the foremost experts in NF2 and schwannomatosis care and management.

To read more about Olivia and her quest to find a cure for NF, visit her blog here.