My name is Diana Hallock and my sons name is Nicholas Hallock. I am writing in regards to my son Nicholas who was diagnosed with “KdVS” Koolen-de Vries Syndrome. Nicholas was 18 years old when he was finally diagnosed in 2010. As I listened in amazement to what the Doctor was saying, I was filled with excitement, amazement, and 101 questions. Before this news these were the hardest years of my life. Living in and out hospitals for three long years with a child who has severe, complicated medical issues when there was no diagnosis or prognosis from any Doctors.
As time went on my son has faced many medical challenges from birth and even to now. Heart surgery, spine surgery, cranial asymmetry, hypotonia, feeding problems (G Tube), speech delays, liver disease, and melanoma just to name a few. I want to reassure other families of what to expect having a child with KdVS. Limitations are not an answer when it comes to our “Kool Kids”. We were told that Nicholas would not talk or walk. That he would not be potty trained. However we have managed to potty train him before he walked. Walking began at 3 ½ years and speech started at 6 years of age. I am writing on behalf of my son, who has significant speech delay and is unable to tell his story.
The truth is Nicholas is a pure joy. He has the most loving personality. For example he does not think he is any different than anyone else. He brings fullness to our lives and everyone around him. The abundance of love and happiness he portrays is real. A few of Nicholas’s activities are swimming, boogie boarding, basketball, bike riding and dancing. He attends East End Disabilities Music Program. Singing and Dancing “The Who Tommy Production”.
Despite all medical issues my mother reminded me that every day is a special one and I must remember to celebrate his life. Doing so, I have embraced hardships with a positive attitude.
I know there are many unanswered questions for Koolen-de Vries Syndrome and Doctors are still baffled as much as us parents. There is no feeling like not knowing. Answers give us hope. I have been blessed with my Special baby that grew into an amazing young man. We will not give up this fight! Hopefully in the future there will be more of an understanding of what people with KdVS are going thru.
My son has made this world a better place. He has affected so many people in so many ways. His laughter and determination is overwhelming along with his unconditional love for everyone and everything. The realization that my son has a rare chromosome disorder and was found as a syndrome in 2006 was more important to me than words can describe. It can no longer consume me. I finally can identify with it. In other words, I lived with the burden of a child with so many health issues at the moment of finding out there are other people out in the world like my son, I was able and willing to accept it. As strange as this may sound I had a group of people, a support group finally. My fear and anxiety became less. Even when it seems impossible to grasp your child has problems.
When you are the one faced with raising a child different than the average child, remember to treat him/her like any other child. I decided to never treat Nicholas any different. After years of doing so I realized that he was capable of many milestones despite his setbacks from birth and on. By Doctors telling me Nicholas would be in a wheel chair as a vegetable I respected that what did I know? However Nicholas beat the odds. Even though Doctors would tell me otherwise. This only proved to me the Doctors don’t know exactly what my son’s future holds.
Not every parent will go through the same pattern for each child is unique and our children have many similarities at the same time different. For example, Koolen-de Vries kids may look very similar but have different intellectual capabilities. We still don’t know the reason for Koolen-de Vries Syndrome, but we can learn as we all take this journey together.
With the help of family and friends I have asked them to describe Nicholas in one word: Outgoing, Care Free, Strong, Genuine, zest for life, spontaneous, caring, self-absorbed, wonderful, courageous, ambitious, and just awesome. You see how I could be disappointed when there is a foundation of words describing my child that is nothing more than positive. In the best interest of the Koolen-de Vries Children and family.