Purple Canaries are rare – it is said, there are fewer than 200,000 of them in the United States. My daughter Jill is one of them.
Jill and her fellow purple canaries have a metabolic disorder known as porphyria. Porphyrias can manifest with neurological (called “acute”) and/or skin (called “cutaneous”) presentations of varying intensities which can sometimes become life-threatening.
Technically speaking, the term porphyria derives from the Greek word for purple so appropriated because the urine of many porphyrics can sometimes be purple-hued. And since porphyrics can be extraordinarily susceptible to seemingly harmless triggers, I have compared them to canaries once used in coal mines to alert hazardous conditions.
Had it not been for government-approved, “safe” chemicals used throughout our local public school system and myriad “safe” medications prescribed to eleven year old Jill, this book might not have come about. These triggers, unrecognized at first, launched the mother/daughter journey that is sure to resonate not only with purple canaries, but anyone who contends with the social and psychological effects associated with chronic illness – including isolation and, for lack of a better word, bullying.