NEW HARTFORD – Linsey Grover was already working as a scientist and proving herself capable of success when, in 2011, she gave birth to a baby boy and found she was capable of the extraordinary. Her son, Layne, was born with Prader-Willi Syndrome (PWS).
Resulting from an abnormality in the fifteenth chromosome, the child’s hypothalamus is affected and creates a myriad of problems for the child as an infant and throughout his/her life. According to the Prader-Willi Association, approximately 1 in 15,000 babies are born with PWS each year. The website states, “PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.”
Many parents of children of PWS are overwhelmed upon first hearing the news. In an interview Amber Battista, also a mother of a child with PWS, reflected on first learning of her daughter’s condition. “I was completely devastated. We didn’t know how to take it,” she said.
The Prader-Willi Syndrome Association highlighted Georgie’s story, also a child with PWS, by writing a letter in his “voice.” The letter touched on hyperphagia, a huge factor for PWS children when they are older. “Even after a big Thanksgiving meal, I’ll feel hungry. Ironic, isn’t it? A baby who was ‘content to starve’ will one day never be finished eating. When this happens, mommy may have to lock the cupboards and the refrigerator,” states the letter.