My name is Karsen. I was born in a small town in Northern Ontario, far from any Children’s hospitals. Quickly, doctors noticed I had a cleft palate, and was not eating properly. I was flown to McMaster Children’s Hospital in Hamilton. Here they discovered I had a heart defect as well.
Mommy and daddy noticed that when I cried my face was a little crooked and that I was really weak. Instantly, my neuromuscular doctor knew it was Moebius Syndrome and that I have Ehlers-Danlos Syndrome. Oh what a journey! The right side of my face is affected, as well as my tongue and throat muscles. I needed a g-tube so I could get what I needed to grow big and strong.
After a whole lot of physical therapy, occupational therapy and speech therapy, (and surgery) I have grown strong and people are starting to understand me better. It took me a whole 7 years to learn to eat all on my own…no more feeding tube! I may be a little weaker than most kids but I am just as smart and run faster than others!
My mommy and daddy say I am perfect, and I’m starting to agree with them! They also say I am their hero with lots of love to give!