In Memory of Colyn
For the first 10 years of Colyn’s life, nobody could explain his mysterious medical issues and failure to thrive. Colyn had needed to be tube fed, had migraine headaches, speech delays, low blood sugar, severe leg pain autonomic dysfunction, and even experienced an episode of acute multi-organ failure and respiratory distress when he was 8 hears old.
Despite numerous trips to the hospital and to see specialists, nobody had an answer for Colyn’s illness. Colyn’s parents were even told that Colyn could not have Mitochondrial Disorder because he had survived infancy and was not developmentally delayed. Another physician refused to order tests for Colyn because he didn’t think a “million-dollar work-up” was justified because he didn’t think there was a treatment available for his issues. Colyn’s parents were even accused of making up the illnesses – an accusation that is far too common for Mitochondrial Disorder parents.
To make matters worse, Colyn’s two older sisters also struggled with mysterious symptoms that included; low carnitine levels for one of them, failure to thrive for the other, seizures, irritable bowel syndrome, migraines, and more. Additionally, Colyn’s mother began having grand mal seizures at age 30 in addition to the chronic fatigue and IBS.
When Colyn’s parents first met Dr. Boles at CHLA, they were overcome with a sense of relief to finally have a name for the illness that had consumed their family. As Colyn’s mom, Patty expressed, “It was relief because we now knew what giant we were facing. It finally made sense and it provided a unified plan among his doctors, that brought us hope”.
Unfortunately, Colyn had more passion for life and living than he had energy to live. He passed away on January 14, 2010 at the age of 15, due to multi-organ failure two days after a sudden acute illness, despite having the best treatment available.