Our little baby Benjamin arrived on January 30, 2012. Seventeen days later Ben was diagnosed with Prader-Willi syndrome (PWS). At birth, infants with PWS typically have low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking which can result in failure to thrive. Benjamin was born 4 lbs 6 ounces and had a feeding tube surgically placed three weeks later. Today Ben has doubled his birth weight but continues to receive most of his nutrition via the feeding tube.
The second stage, the one we fear, has a typical onset between the ages of two and eight years. In this stage Benjamin will experience hyperphagia (extreme unsatisfied drive to consume food) that will last throughout his life. His metabolism will not work correctly resulting in a significantly lower caloric requirement than is typical. In short, he will be hungry, ALWAYS. To make matters worse, he can only take in about half of what his brothers can. His life will depend on our strict monitoring of his food intake and daily exercise, making independent living difficult.
Although we are still grieving, we are also determined to do what we can to optimize the quality of Benjamin’s life. Our family is participating in this One SMALL Step walk to help raise money for the Foundation for Prader-Willi Research. The proceeds go to fund the Prader-Willi Syndrome Research Plan. Much of the research is aimed at eliminating the hunger so that the children of today can live as independent adults tomorrow.
Please consider joining us by donating or walking beside us!
Thank you for your support!
Rob & Brandy
The link below provides a little more insight into PWS and the Prader-Willi Syndrome Research Plan.