John’s Story

John was born on April 11th 2006, at Mount Sinai Hospital in Toronto.  He was born with Syndromic Craniosynostosis, which is a rare genetic birth disorder characterized by the premature joining of certain bones of the skull before or shortly after birth.  This results in an abnormally shaped skull, face and brain.  In John’s case in resulted in numerous complications; misshaped skull, protruding and misaligned eyes, increased pressure on the brain, and an obstructed airway.

John spent most of his first 3 months of life at Toronto’s SickKids Hospital under constant monitoring.  What followed was a number of surgeries (Seven to be exact) to save his life and improve his condition.  There have been three significant surgeries to date: the emergency VP shunt placement for obstructive hydrocephalus in order to stop the fluid from accumulating on his brain, the full cranial reshaping surgery to correct  his skull at a year old, and the LaForte 3 to bring his mid face forward in order to correct his bone structure.

Over the past 7 years we have been in and out of hospital for various reasons, and John continues to be seen by a number of doctors to monitor his condition.  Fortunately at this point he has been given the green light by all his doctors.

At this time there are a team of scientists in Great Britain studying John’s DNA to pinpoint his specific syndrome, as this remains a mystery.  This should allow us to better understand what obstacles or complications may arise in the future.

John continues to amaze us with his courage and positive spirit.  He has often been referred to as an “old soul”.  We are not sure what the future holds as other surgeries might be necessary.  Thanks to the wonderful doctors at SickKids Hospital, John is doing extremely well.  He is a very happy, energetic, young boy who is enjoying school, loves reading, swimming, playing lego, and life with his family and friends.