notes

Get a better understanding of osteogenesis imperfecta conegital at the OI Foundation, the information hub for all things OI.

an introdution

She was born with a wild thicket of black curls and nearly every bone broken in her delicate frame.

Yet the latter went unnoticed, the contrast striking: pure black licorice piled on top of her head pitted against the color of her porcelain baby skin.



Crying, howling, body and soul, the infant took only to the comfort of her 21-year-old mother, dizzy and exhausted herself after five hours of labor, her first delivery. The infant looked up at her mother - or maybe at a bright light behind her - her eyes, the shape of half moons, unfocused but curious.

It was 7:30 a.m. now, and nothing seemed wrong.

But Amy Sperling would soon become the glass baby; untouchable for fear she might shatter. Doctors shook their heads and wrung their hands as if to squeeze out an answer. Nothing made sense. Her diagnosis was unclear, uncertain and unseen before in Brooklyn Jewish Hospital.

It's a long, ugly story what specialists told the Sperling family 52 years ago, and it left them a daughter with a body deteriorated to 3-foot-9 and 53 pounds, buckled, bent and bound to a wheelchair. Suffering through hundreds of corrective surgeries, she's blemished with the elevated scar tissue and warped limbs to prove it.