Jaime’s Story
April 27 2011
Posted in Events - Past
My name is Jaime Cirillo, I am 34 years old, married with 2 children. I have Neurofibromatosis Type 2. My mother, Virginia Frassetto also had Neurofibromatosis Type 2 (NF2) and I got it genetically from her.
I hope you will help me raise funds and awareness for NF which has changed my life forever. When I was born in 1976, my mother was already paralyzed from the waist down. Mom had many complicating tumors, and back then Doctors didn’t really know what was going on, and they misdiagnosed her for years.
I never knew if she was going to be home when I got off the bus, because many times the ambulance came and took her away to the hospital when I was at school. Imagine my anxiety as a child, and the insecurities I felt so young, never knowing if my mom would be there when I got home.
I was diagnosed when I was 10 years old with NF2, but my acoustic neuromas did not present until I was 19 years old. My only problem then was a legally blind right eye, and the cafe au lait spots.
I had an ignorant attitude about this diagnosis thinking that since God took my mother from me, he clearly wouldn’t let anything further happen to ruin my life. I was warned against having children, but again, I was ignorant about that too. When I was 24 years old, I gave birth to a beautiful baby girl in 2001. My right leg calf hurt my entire pregnancy, I thought it was just leg cramps due to being pregnant.
In 2002, I met a new primary care physician. He found a large meningioma tumor in my cervical spine that was compressing my spinal cord. He said to me in the office that day when my daughter was only 14 months old, “You have to have this tumor removed, or you will only have 5 years left to live, there is a risk in having it removed, there is a 50 percent chance you will wake up paralyzed from the neck down.” I saw my whole life history flash before me, and I was scared to death that I’d relive my mother’s life and miss out AGAIN with my own child.
My ignorance toward this disorder ended that day. Now I was in a war. The surgery was a success, but 6 months after that, a new problem, my right eye retina detached and I was in surgery again. This time, I woke up totally blind in my right eye.
Life goes on with NF2… it’s a battle every day, things that used to easy are a struggle. I now have 5 brain tumors, 13 spinal cord tumors, and that pain that was in my right leg calf turned out to be a neuroma on a peripheral nerve that runs through the muscle. I am in pain every single day, I suffer from headaches, I have post op pain in my neck, I have leg, and lower back pain, I am dizzy and unbalanced, blind in one eye, and I have very bad anxiety. I look at my kids every single day and wonder if I passed that horrid gene. I have anxiety because I want to live to see them grow up, and because, I do not know if my kids are afflicted with this devastating disorder.
I do my best every day to be a good mother, and wife, and I stay involved with the school and my children, and do as much as I possibly can with them, to make memories and make sure we live every day to the fullest. I don’t know how long I’ll be here, I am on permanent disability, and I want to make as many memories as I possibly can, so my kids never forget how much I love them, and that I am doing all I can in this fight, to find a cure, in case, God Forbid, I passed that gene.
My hope is that in participating in 4NFstories, that individuals who may have NF be diagnosed accurately the first time, with awareness and education being the key to preventing similar stories like my mom’s misdiagnosis. Please support me in my efforts by donating to my Firstgiving page.
Sincerely,
Jaime Cirillo
