I was born on Friday August 17, 1979 at 3am in the morning (my poor mother), I was born with a missing Sternum, a cateract in my right eye and Nystagmus, Myopia, Astigmatism and also returning to right eye, a very very small pupil, my right eye can only see light and dark and my left has 5% vision.
I was also born with a Coarctaion of the Aorta, Arteriovenus malformation, Cerebralvascular diseas, slight deafness (due to heart defect), and huge birthmarks on my face mostly on right side (hence my right side is weaker), and Dwarfism.
In 1999 I went upto a special program at the school for the Blind in
A year later I get this call to go see her, she had done some research and found out about 4 babies in America with a Syndrome called PHACE, she told me that this is what I had, FINALLY!, I had a name for my condition, I could tell people what I had and now I felt like a person with a condition instead of a person with many.
This year doing much research of my own, I found out my syndrome could be X-linked, which a friend of mine makes me really unique indeed, I am the only one in
I now am volunteering at my church school teaching years 1 to 3 how to use the computer(for all you American's who use grades this is ages 5 to 7). I am enjoying this and the children love me too.
Arwen