What is KT Syndrome

The day my daughter was born was a beautiful blessed day. As I believe anyone who has children understands. We spend nine months in anticipation. We have our ups and downs of pregnancy, the weight gain, the cravings, the restless sleep. So so much to endure. But through it all we hope for just one thing, a healthy baby. It truly doesn't matter if you have a boy or a girl, well you may wish for a boy or a girl but really you know that no matter what the sex you are going to love them the same. But you pray to god to please have a healthy baby. The day that my daughter was born I remember the first thing I did was look between her legs. HA HA! They told me I was going to have a girl, but I just had to see for myself. There she was! All seven pounds and 2oz. My god was she beautiful. SHE! I had a girl! As I layed In the hosbital bed I remember looking at her while they were cleaning her. I thought to myself, wow is her leg dirty?. It looked like a purple leg. Of course I thought it was from being inside me. It wasn't until my darling sister asked the nurse "what is that on her leg?", that I realized it was more that just a dirty leg. They told me that it was only a birthmark.

the beginning...

That day in the hospital was the first step of a very large mountain that I would begin to climb. The journey that leads me to this very moment. My daughter was first sent to a dermatologist. Dr. Howard Pride, who I absolutley love. After examining my daughter he admitted that it was not in his field and referred us to a plastic surgeon. This is where we would find out she has KT Syndrome. Which stands for Klippel Trenauny Syndrome. Kt is a combination of a port wine stain, venus and vascular malformation, and hypertrophy of the extremity. Which means that her affected leg is larger than the other leg. My daughters leg looks like a purple mass with bluberrys on it. Once a child said, "Layla has jelly on her leg" ,very cute. Needless to say this has been one hell of a year for her as well as for her father and I. She often suffers from pain, and bleeds from her leg on an average of at least once per day. Those two things have been the absolute hardest to deal with. I spent many days and nights crying, not understanding why she has to go through this. I still to this day wish with all my might that I could take it for her. I feared many times how children would treat her. At first I had made my mind up that whenever in public I would cover her leg up. Not because I was ashamed, but because I felt I had to do it for her, I didn't want everyone staring at her. Let me tell you, that was a very short lived desicion. I realized that had I covered it up, I would have made her feel ashamed of herself. I wanted her to be proud and strong. So in the summer when it's hot she wears shorts and dresses just like any other little girl. Believe me it is very hard when people stare, because they all do. As a parent I want to lash out and ask them why they stare, but then the realistic person inside of me realizes that it is only human nature. It is quite normal to want to look at something that is out of the ordinary. Just as we want to look at someone who is beautiful. At this point in her life I wish her physical apperance was all she had to worry about. Unfortuatlly she literally also has mountains to climb.

At three years old she has to this day never slept a full night. Nor have I. It has become very evident as she has gotten bigger that she is in extreme pain at night. She is now able to pull at her leg and kick. She screams for an hour sometimes. Mommy it hurts!It is the most heartbreaking thing to handle. As I said before she frequently bleeds. Sometimes enough for only a bandaide, but most of the time her legs gushes blood and we have to react quickly to get the bleeding under control. She has probably seen a couple dozen different doctors since birth. We have decided Boston will handle any surgeries, and she will be seen in Philadelphia for maintenence. KT is a lifelong disorder. She will have this for the rest of her life. There are things that can be done along the way to help her, but it can never be erased.

I spent a long time not really knowing how to accept this. Not really knowing if I ever could. I was so very depressed. I just feel so completly helpless. Which brings me to where I am today. This website and all of my great plans for following my dreams while inspiring my children and everyone else. As odd as it may sound, yoga is what saved me. I continued to workout. I was in the process of becoming an aerobics instructor before I became pregnant. I had some complications while pregnant and had to stop working out. After she was born deep inside I still had the passion. I started with teaching once a week, working my way up to six or more classes a week. I found my real love in teaching yoga even opening a small studio in my home. Yoga has helped me kept my mind healthy and strong. It has made me focus and helped me to realize that everything is going to be alright. I will get through this. Why can't I make that yoga DVD I always dreamed of? Nothing is going to stop me now. I am on fire. I want my children to see that anything is possible and while following my passion and my dreams I want to help others with KT syndrome.