My name is Alisha and my son has Prader-Willi Syndrome. The day he was born was quite crazy. I had an emergency C-section and he was put into the NICU not too long after… and so it all began. The doctors knew something was seriously wrong. He couldn’t eat, wouldn’t cry and didn’t move. Within the first week of life, he had two pretty bad breathing episodes. We spent two weeks in the NICU before being transferred to a local Children’ s Hospital for further testing.
At the hospital, we met with several different groups of doctors. The genetics team told us they thought our son had Prader-Willi Syndrome (PWS) but needed to do further testing to confirm it. Prader-Willi syndrome is a rare genetic disorder on Chromosome 15 that is present at birth that results in a number of physical, mental and behavioral problems. A key feature of Prader-Willi (prah-dur VIL-ee) syndrome is a constant sense of hunger. The part of the brain that controls feelings of fullness or hunger does not work properly in people with PWS. They overeat, leading to obesity.
Four days after being told our son may have PWS, we got the final confirmation. We spent the next six weeks in the hospital and finally it was time to come home. We left with a feeding tube, therapies set up and contacts at the Prader Willi Syndrome Association.
Here we are , almost five years later and still coping with PWS. We still have our moments, but I can say that we have a great support system. It will be a way of life different from most families and all my friends; but, my son is here for a reason, and I love him to pieces.
I have HOPE that a cure will come, and he can live a more independent life. But until that day comes; I will lock the food up, keep him on his schedules, log down his food journal everyday, get him therapies, watch him every moment when we are somewhere other than home, advocate for him, and most of all – be his mommy!