I was born with a congenital heart defect that went undetected for the first six months of my life.
After the diagnosis, it was determined that I needed open heart surgery to live. The surgery was performed on 7/31/75, my “second” birthday. I came home from the hospital three weeks later and insisted that my parents take me to “get a big wheel” because I was all better.
That is how I have lived the last 37 years of my life. I have played sports, had three children and done my best to ignore the stares and comments about the large scar on my chest, the scar that gave me life! I am truly grateful for everyday that I have been given.
On 12/12/12, my life was changed again when I was diagnosed with Klippel-Feil Syndrome (KFS). KFS is a rare congenital disorder that not many doctors know about. For years I was suffering from headaches and neck pain and was told by many doctors that it was “just stress.” I knew my body better than that and was not going to accept a life of pain. Although I was scared, I thought back to the day I got my big wheel and decided then and there that I had to find answers! Unfortunately, the diagnosis came with no answers.
It came to me on a folded up piece of paper from a doctor who did not want to deal with it. Instead of letting the anger and fear consume me, I am fighting for knowledge and answers. I seek this not only for myself, but for all of those who are affected by a “RARE” disease. Research and awareness are the KEY to my future, the future of those currently seeking answers and the future of generations to come.