'I Don’t Know Why They’ve Waited.' Families Stress Over Delay in Children's Health Funding

Lauren Cooper first started to notice something was awry with her daughter Molly when she was seven months old, in 2003, and was unable to bear any weight on her legs. Alarmed, she and her husband Kevin Allen took her to a slew of doctors and neurologists, but a diagnosis evaded them. Finally, Cooper found something on the internet called Rett Syndrome, a rare neurological disorder found mainly in girls with symptoms that matched her daughters’. Molly not only tested positive for the syndrome, which affects language, breathing, coordination, and can produce seizures, but had one of the more severe mutations.

“I had a pretty good idea of what was going to be in the future for us,” Lauren Cooper recalled in an interview with TIME. “At thirteen months, I knew that she was gonna need ever-expanding care.”

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