Lily Tippett’s mother, Julie Tippett, 40, knew something was wrong before her daughter Lily, now 13, stopped growing 32 weeks into Tippett’s pregnancy.
Lily never moved while in the womb.
When she was born, Lily was unresponsive to Apgar tests, the standard tests given to newborns to determine physical condition at birth.
“You’d pick up her arm, and it would fall dead,” said Julie Tippett.
For two weeks, while Lily lay in the neonatal intensive care unit, the doctors told Tippett they didn’t know what was wrong.
It took 18 months for doctors to find an answer.
Genetic testing finally revealed Lily had Prader-Willi syndrome (PWS), a genetic disorder that affects the “hypothalamus part of their brain, which normally registers feelings of hunger and satiety,” according to the Prader-Willi Syndrome Association (USA) website.
Read more here: Coping with ‘starving’ disability.
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