Dylan was born on October 1, 1996 and passed away on February 20th, 2006. While Dylan’s first year was extremely difficult as a result of the symptoms of Canavan’s the remainder of his life was happy, comfortable and content. Symptoms included the inability to sleep for extended periods of time, extreme muscle stiffness and spasticity, reflux, difficulty swallowing, seizures, gastro-intestinal challenges, blindness and a lack of any voluntary muscle control. Dylan was diagnosed with Canavan’s in August of 1997 and was one of just 3 children in Canada with Canavan’s at the time.
Following his diagnosis and the insertion of a feeding tube, Dylan we were able to provide food, medicine and comfort to him. While he couldn’t see, his sense of hearing and touch were particularly sensitive. Whether it was music or the sound of his sister’s voice, he always loved the sounds around him. He also loved to be held and touched and played with.
For those who had the fortunate opportunity to spend time with him, Dylan provided some exceptional education. He was able to show people what truly matters in life. Simple things such as a laugh and a good night’s sleep were the primary objectives. The ability to learn to prioritize, knowledge about medicine and genetics and a host of other tangible, as well as intangible lessons were a part of his incredible life.
Dylan continues to be terribly missed by his mom and dad, and sister, along with grandparents, and a wide array of friends.
While we wish that no one have to go through the extreme health challenges and ultimate loss of a child, we also hope that people may continue to learn from our experience in a positive way. We have been blessed with Dylan’s life and legacy and while we raise awareness about genetic neurological diseases, we also ask that you give generously to the charities which we would like to support.
