On March 2, 2008 our family’s life was turned upside down when we took our little 4-year-old boy (Evan) to the hospital with what seemed like a harmless sore tummy and possibly appendicitis. Shortly after arriving at the hospital Evan went into surgery and had has his appendix removed. His appendix was fine but Evan wasn't. He never woke up from his anesthetic, was moved into the ICU, and went into a coma for about a week. When he did come around he had sustained severe brain damage.

It took a couple days after his surgery to diagnose him with a neurological disease called Acute Disseminated Encephalomyelitis or ADEM. (It’s basically like a very acute form of Multiple Sclerosis).

However, test results over the following year indicate that Evan has an underlying 'probable' mitochondrial disease. We are waiting for more test results to confirm the diagnosis (though genetic testing), but the MRI and muscle biopsy are indicative of a mitochondrial disease. This is a degenerative genetic disease and there is no cure. ADEM is still the working diagnosis, and the more detailed testing will likely just identify the mutated gene and put a name to it.

3.5 years later, Evan has made some small gains, but still cannot eat (orally), walk or talk and is a spastic quadriplegic bound to a wheel chair.

Not knowing what tomorrow means for Evan's health is a tough way to live.We live each day to the fullest,doing all we can to bring a smile to Evan's face and provide the best quality to life possible. Needless to say, our lives have changed forever.

With no formal organization in Canada for people affected by this disease, Blaine attended a Mitochondrial Disease Symposium in Washington, D.C. last June 2009 where he met several other Canadians who were in a similar boat. Less than a year later, that same group has channeled their spare energy into something that will reshape the landscape of this disease forever. MitoCanada was born in March of 2010 and families with this disease are no longer alone. See www.mitocanada.org for more information.

Click on the Wiki pages on the left hand side of the screen for updates, info about ADEM and Mitochondrial Disease, video clips of Evan's progress, etc.)