My life growing up with VCF Part Three.

 My Dad always knew that there was something wrong with me, he just wasn’t sure what. I wasn’t your average kid. I was very slow and very far behind. I lacked basic motor skills like walking and talking, sitting up and standing. I couldn’t sit up without assistance and I couldn’t stand unless I was grasping onto something like the edge of the coffee table. I didn’t learn how to talk until I was two years old. I could natter away for hours but only my family could understand me. From the very first moment that I was born, my dad had a gut feeling that something wasn’t right. My parents tried for years to figure out why I was so delayed because they wanted some answers. When I was five years old, I saw a bunch of doctors and specialists. They weren’t able to give my parents a proper diagnosis. In 1992, my parents took me to see a neurologist. She examined me and then referred me to a geneticist. She assumed that I had Velo Cardio Facial Syndrome. That very same year, my parents took me to Sick Kids Hospital in Toronto to get a bunch of tests. The geneticist told my parents that I had Velo Cardio Facial Syndrome. They were very relieved because they finally knew why I was slow for my age.

My life growing up with Velo Cardio Facial Syndrome Part Two.

 When I was a single cell in the womb, I already had VCF. As the cell multiplied, each cell had Velo Cardio Facial Syndrome. Velo Cardio Facial Syndrome is caused by the absence of strands of DNA on the 22nd gene. Even though I am mentally challenged, I am a very healthy and independent person. 

I constantly strive to learn new things and develop new interests. When I was younger, I was insecure about meeting new people and trying new things. I was very shy. Whenever people would talk to me, I would clam up and freeze. I would always get tongue tied around strangers. Whenever a relative would strike up a conversation with me at a funeral or a wedding, I would just stare at them. My parents would force me to respond. I preferred staying at home, feeling sorry for myself. When I was in my twenties, my siblings would invite me to the movies or ask me to go bowling with them and I would always say no. Eventually they stopped asking and left me to sulk. I wasn’t very social or outgoing back then. I would turn down any opportunity to try a new thing or build a new skill. 

I didn’t develop an interest in volunteer work until I came to the Lord. I was antisocial and insecure. I only had one friend back in those days because I didn’t go out much. Being connected to God has made me a much more loving person. I am a happier and more confident person than I was in 2007. In 2007 I was angry and miserable for a lot of reasons and I was a bit of a recluse. I hardly ever made plans to go out. In 2012 I became curious about Faith and I wanted to learn more. I wanted to know what it was all about. I read and studied my Bible vigorously every day. The more consistent I was in my scripture reading, the more I realized how much God loved me. I finally understood that my disability wasn’t a mistake and that I was put on this earth for a reason. Knowing that gave me tremendous joy. When I finally figured out who I was and where I came from, my life took on a whole new meaning.  Growing up I had always been told that my disability was a fluke. Hearing that on a daily basis made me mad. I didn’t know at the time that God loved me and that he sent his son to die on the cross for my sin. When I finally believed that I was loved by the creator of the universe, I stopped being a wet blanket and I started living. 

My life growing up with Velo Cardio Facial Syndrome Part One

 My parents always suspected that I had special needs but they didn’t know exactly what kind of disability I had. Genetic testing did not exist yet; not until 1992. When I was six years old, my parents took me to Sick Kids Hospital in Toronto to get my genes mapped. I saw a throat specialist and a geneticist on the exact same day. I had a very bad cold. My parents took me to Toronto anyway because they didn’t want to cancel the appointment. The throat specialist put a long clear tube up my nose to check for velopharyngeal incompetence. My speech at that time was full of nasality. She wanted to see if I needed surgery to correct my speech impediment. Much to her surprise, she discovered that my throat didn’t require surgical correction. She told my parents that all that I needed to correct my speech was lots of intensive speech therapy. I started speech therapy later that year and was pulled from it when I was much older by my school without my parents consent. One day I came home from school and my mom asked me how my speech therapy was going. I looked at her and said “What speech therapy? I don’t have speech therapy anymore”. My mom was really annoyed. She went to my school and spoke with a young snippy teacher who claimed that my Mom signed a form releasing me from speech therapy. My mom insisted that she did not see nor sign any such form. My teacher eventually gave up and stopped going on about it. My mom left her office and She shut the door in my mom’s face. I continued to have speech therapy in highschool. My parents made me repeat myself and enunciate until I could speak clearly. I eventually outgrew my speech impediment when I was twenty one.

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. 

What people should know about Velo Cardio Facial Syndrome Part One

 Hi, My name is Charlotte Ash. I am thirty five years old and I was diagonosed with Velo Cardio Facial Syndrome when I was just a kid. For those of you who are unfamiliar with VCFS, Velo Cardio Facial Syndrome is a 22 q deletion, which means that there are strands of DNA missing from my 22nd gene. I struggle with Mathematical concepts including logic and problem solving but I am a very independant person. I can do most things on my own except drive a car and travel independently. I get around the city by taking the bus or by walking. I didn't know that I had a disability until I was about ten or eleven years old. My parents waited until I was much older to tell me that I had a genetic disability. When I was in my late teens, early twenties, I hated having a disability and I tried very hard to make it seem less obvious. I loathed who I was and I despised God because I couldn't have children. I was jealous of my brothers and sister because they could do things that I couldn't and that really bothered me. When I was twenty six, I became a Christian and I stopped wishing that I was normal. I finally realized that my life had meaning. I stopped hiding the truth about who I was and I started to embrace my individuality. I have VCF light which means that I don't have the heart and speech problems and mental health issues often associated with severe VCF. Many teens and adults who have Velo Cardio Facial Syndrome are born with a cleft pallet and heart defects. It is common for people with Velo Cardio Facial Syndrome to develop more severe mental health challenges later in life.