Gabriel
Our story began 7 years ago when our third child Gabriel was born on Oct 5,
2002. Everything about my wife’s pregnancy was normal. She ate a balanced diet, and
got plenty of rest and exercise and did not consume any alcohol. We were so happy to
welcome our newest family member. Gabriel was a big baby at 10lbs.
He completed our family with three children, a girl and two boys. He was so cute
and looked very similar to his big brother, however, we did notice Gabriel appeared to
have a large bruise covering the left side of his face and a large portion of his body. We
soon learned from our doctor that this was not a bruise but a birthmark called a Port
Wine Stain. The medical staff were concerned that Gabriel may have a condition called
Sturge- Weber Syndrome.
We were consumed with worry and grief over what this diagnosis would mean for
our new baby boy. We were told only of the worst case situations and the information we
were receiving from doctors was all ”doom and gloom”. We were given text books to
read with short blurbs on the disease. We also had to keep happy faces for our other two
children who would ask us, “why is he all red, Mommy/Daddy?”. Of course they were too
young at the time to understand, so we just explained this is how God made him extra
special. The next two weeks we had numerous doctor appointments and finally after a trip to our local Children’s Hospital, the IWK in Halifax, Nova Scotia,
Gabriel’s diagnosis was confirmed. He indeed did have Sturge-Weber Syndrome.
Our world was turned upside down and we didn’t know which end was up. I can clearly remember walking out of the hospital in a dazed state. I was
trying to absorb and comprehend what this would mean for our new son and our family. I can remember being overcome with grief and I cried my eyes
out when I was alone. The first week of my son’s life was the lowest I have ever been. I never asked why or felt sorry for myself but was just so worried
about the unknown.
However, this changed when I did a Google search on Sturge-Weber and found the Sturge- Weber Foundation in New Jersey, USA. They had plenty
of information about Sturge-Weber and photos of individuals who had birthmarks similar to our Gabriel. We contacted the toll free number and spoke
with staff members. It was at this moment we gained hope. We learned in joining the online Support Forum that life can be good with