What people should know about Velo Cardio Facial Syndrome Part Two

I was born with Velo Cardio Facial Syndrome but I wasn't diagonosed with a disability until I was about six or seven years old. My Dad was the first person to notice that I was delayed. I wasn't reaching my milestones like walking and talking. He knew that there was something different about me but he couldn't quite figure it out. My sister could do things that I couldn't and he thought that was strange. As I got older, I figured out how to talk but I couldn't communicate very clearly because my velopharyngeal closure wasn't working very well, causing me to talk through my nose. I had a difficult time learning in school and I was bullied a lot because of my speech. My parents took me to see all kinds of doctors and specialists but no one had any answers as to why I was developmentally delayed. In 1992 my parents took me to Sick Kids Hospital in Toronto. I was referred to the genetics department at Sick Kids Hospital to confirm that I had Velo Cardio Facial Syndrome. My parents met with a doctor several months before, who guessed that I had VCF. She referred me to a geneticist in Toronto who performed all sorts of tests on me to figure out what kind of syndrome I had.

When She told them that I had Velo Cardio Facial Syndrome, they were relieved because they finally knew what they were dealing with. When I reached adulthood, I became very insecure about my disability and I tried very hard to make it seem less obvious. I would often pretend that I didn't have VCF because I was embarrassed about my condition. I hated who I was and I envied my siblings because they could do things that I couldn't and that bothered me.

I resented having a disability and I often wondered why I was born different. I would look at my siblings and think Why me? Why am I disabled and not them? How come they are so smart and perfect and I'm not? This is so not fair!" It bothered me that I was the only one in my family who was different. When I was in my late teens, early twenties, I hated God because I couldn't have biological children. When I was seventeen years old, my family doctor told me that I could never get pregnant because I had a fifty/fifty chance of having a baby with Velo Cardio Facial Syndrome. At that time I was devastated. My heart broke into a gizillion pieces. As the years went by, my sadness morphed into anger and I took my anger out on others. I was a very difficult person to love because I was so bitter.

When I was twenty six years old, I asked Jesus to come into my life and I was miraculously healed from my emotional pain and heartache. My heart no longer ached. I was free. 

I stopped being self conscious about my disability and I learned to accept my limitations. 

I still have those days where I get frustrated that I can't drive, but I am no longer insecure about my VCF. I am thankful to God for making me this way. If it wasn't for Him, I wouldn't be unique and awesome. Velo Cardio Facial Syndrome is a genetic deletion of the 22 q gene. Something went wrong when I was conceived in the womb. My twenty second chromosome was damaged. I am missing thirty five strands of DNA on my 22nd chromosome. I am small and short because of my VCF. Velo Cardio Facial Syndrome has a wide range of symptoms that vary from person to person. Some symtoms are more severe than others. Velo Cardio Facial Syndrome includes facial abnormalities, speech and feeding difficulties, learning difficulties, developmental delays, emotional and behavioural issues, extreme sensitivity to the cold, etc. Velo Cardio Facial Syndrome is different for everyone. Some people who have the syndrome are angry, violent and moody while others are emotionally unstable but not harmful to themselves or others. Many teens and adults with VCFS have behavioural issues which means that they laugh when they shouldn't laugh, they cry when they shouldn't cry and they have meltdowns in public. They can also be inappropriate and rude sometimes because they have no filter. Velo Cardio Facial Syndrome can be both mild and severe. One person can have violent tendencies towards others while another person can be temperamental but gentle. Not everyone with the syndrome is aggressive.