My mother’s love and resilience helped my sister through a rare condition. But every step in her 17-year life was a fight with health insurers.
My sister had a condition called “aromatic L-amino acid decarboxylase deficiency”.
Mouthful, right? It’s also exceedingly rare: something like seven other children had been diagnosed with it back when she finally got the diagnosis at age 12. The condition is so unusual that no pharmaceutical company would ever invest in studying it.
It’s a pediatric neurotransmitter disorder, but from when she was born until her death at age 17, it was easier to just say she had cerebral palsy – a blanket diagnosis given for many neurological disabilities caused by damage to the brain around the time of birth.
Cerebral palsy can look like anything, from a bum hand to full paralysis. My sister was unable to walk or talk, was incontinent, and could not hold her own body up, even her head – a perpetual infant.
Every step in this journey was a fight with our health insurance. I remember my parents changing insurance companies four times in as many years in a desperate attempt to get my sister’s needs approved. They had to upgrade their plans to the most comprehensive options, going beyond the plan provided by my father’s work to include full coverage for durable medical equipment – from an oxygen generator and oxygen tanks to nebulizers and suction machines, to name just a few. They were paying hundreds of dollars a week in premiums.
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