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Domenica’s Story…

Domenica Beth Scalzo was born on May 3rd 2017 to her parents Nicholas and Noelle and her older sisters Alexandria and Danica. Soon after birth Dom began exhibiting symptoms of hypotonia, inability to feed and was extremely difficult to wake. At a week old she was admitted back into the hospital and into the NICU at Morristown Hospital and labeled failure to thrive. During her two-week stay she endured various testing and eventually went through surgery to insert a gastronomy tube in her stomach to assist in feeding and nourishment. At four weeks old Domenica was diagnosed with Prader-Willi Syndrome which is a rare chromosomal disorder which affects only 1 in 15,000 births.

Prader-Willi Syndrome (PWS) is a complex disorder resulting from an abnormality on the 15th chromosome effecting the hypothalamus in the brain. At birth symptoms of low muscle tone, inability to wake, and inability to suck are typical. As the children grow and stages progress there is generally a global delay with typical milestones such as crawling, walking and talking happening much later than usual. There are often learning disabilities and cognitive impairment is common.

PWS is most commonly known for the cruel and insatiable hunger that comes a bit later in childhood. The relentless hunger leads to overeating, obesity and can even result in early death if left unmonitored. At this point in time there is no cure for PWS. Treatments include the use of human growth hormone, vitamin supplements and various therapies.

Currently Domenica seems to be growing and thriving well surrounded by a loving village of support. She is responding well to HGH and to her daily routine of therapies and play.

For more information on Prader-Willi Syndrome please visit PWSA-(USA) https://www.pwsausa.org/ Or FPWR https://www.fpwr.org/