Bizarre symptoms and debilitating neurological attacks that happened only at school upended eleven year old Jill’s world. Skeptical medical specialists attributed the odd, recurrent symptoms to the adoptee’s biological inheritance, then to a mental illness. Disbelieving school officials labeled her an attention-seeking faker.
Jill and her mother Joyce insisted the symptoms had a physical base. Medical experts were shocked when DNA testing proved that the mutant gene associated with a “rare,” genetic metabolic/enzyme disorder was harbored in Jill’s liver. Acute Intermittent Porphyria is seldom identified in U.S. adults, never mind children. Through it all, Joyce was on the hunt for a connection between the school and the relentless symptom and temporary treatment merry-go-round.
Finally, she found it. Jill was ultrasensitive to chemical fumes that permeated the local school buildings. She was literally allergic to school—a “purple canary” harbinger of an inherent danger in today’s chemical-laden education facilities. Purple Canary is more than a tale of a girl and her mother struggling for answers. It’s a story of mother’s intuition; medical misdiagnoses; special education categories; contemporary school bullying; a school chemical toxicity/illness connection; questionable academic and medical ethics and the simple truth that we all fear what we don’t understand.
It is intended that a portion of the proceeds from Purple Canary, The Girl Who Was Allergic to School: The true story of how school chemicals unleashed a “rare” illness that devastated a young girl’s life will be directed towards addressing the training, diagnostic and/or treatment deficiencies (identified chiefly by porphyric patients), beginning with the identification and articulation of porphyria’s molecular base activity.
Priority will be given to medical-related organizations and/or individuals that demonstrate strong adherence to Hippocrates’ (first to describe porphyria) tenet, the “chief role of the physician [is] to aid the natural resistance of the body to overcome metabolic imbalance and restore health and harmony to the organism [as]…one coherent, integrated whole.”
Note: this statement is subject to modification by Purple Canary at any time.