As many of you already know, this is the second year that I will be hosting South Jersey's Ride4NF Bikerun and Benefit to raise money for NF Network to help fund research so that we may someday soon find a cure.
This year, I will be 35 years old, one year away from the age my Mom was when NF2 took her life away. I will fight this disorder my whole entire life if I have to, so that I can live to see my kids grow up, and so that no other children have to lose a parent, or no parent has to lose a child to NF2.
Do you know what Neurofibromatosis Is? It's a central nervous system disorder, that causes tumors to grow on the brain, spine, and any nerve in the body. There is no cure. It's caused by a genetic mutation of chromosome 22. It's painful, it causes you to lose function, it ruins your life. There are really no good options for treating it either, such as, leave the tumor alone, and risk losing your life, or have it removed and risk losing your hearing, or vision, or the use of your legs.
I had my first surgery in 2002 to have a tumor removed from C-5,6 and 7. If I didn't get it taken out, I'd have died by now. They gave me 5 years to live. The chances of waking up a quad, were 50 percent. The day I got that news, was the day my anxiety attacks were born. Surgery was a sucess, I can still walk, that tumor is gone, however, there are 3 new ones in it's place. Right now they are small, and all I can do is pray they stay stable.
I have 5 brain tumors, 19 spinal cord tumors, and a tumor in my right leg calf that causes me the most pain out of all of them. I am blind in my right eye, I have balance problems, I suffer from migraines and anxiety attacks. BUT, I focus on all the positives, I can still hear, I can still walk, and I can still fight.
I am married, with 2 children, and I stay as involved with my kids as I can. I want to make as many happy memories as possible. And I want to know I did all I could to find a cure, should I have passed that awful gene.
Please help me in my quest to raise money to help fund research for finding a cure.
Since I am on permanent disablility now, and can no longer work, I work on spreading awareness, and finding ways to help NF Network raise money to fund research so there will soon be a cure for Neurofibromatosis.
I don't watch and wait, I watch and live :)
Thank you for visiting my page, and for taking the time to read my story
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!