Please Support A Cause!

MAY is NATIONAL PRADER-WILLI SYNDROME AWARENESS month. There are parents of “Special Needs” children, not just those with Prader-Willi Syndrome, that are facing challenges beyond normal comprehension for the future of their children. Some of these children may never walk, play sports, dress themselves, feed themselves, have children or simply say... I love you.

Imagine receiving the news from your doctor that your child has Down Syndrome, Cerebral Palsy or one of thousands of other possible diagnosis’s that will shape their lives and change your’s in a way you never expected. It is likely that if it isn’t your family, you probably know a family that has a “Special Needs” child.

Six and a half years ago my wife gave birth to twins. Soon after, our world was turned upside down when we were told that one of the twins had Prader-Willi Syndrome (PWS). PRADER-WHAT? Like most of the world, we had never heard of this syndrome, yet we had probably crossed paths with these individuals. Prader-Willi Syndrome has an incidence rate of 1 in approximately 15,000 births (thats two for every city the size of Oswego). A result of a deletion in the 15th chromosome, the most prevalent issues associated with PWS are low muscle tone 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.

Living in Oswego has been a blessing for my family and more importantly, for my daughter who has PWS. She has been a part of Early Intervention, the Brokaw Early Learning Center and Diagnostics Kindergarten. We have worked with many wonderful therapists, teachers, caregivers and volunteers along the way and have made many new friends. Please reach out in support of a “Special Needs” parent or support a cause for research to enhance our children’s lives through improved treatments and cures.

Prader-Willi Syndrome is not who my daughter is, it is what she has. Who she is and becomes will be determined by her friends and family in Oswego and beyond through love, support and acceptance.

For more information on Prader-Willi Syndrome, please visit www.pwsaillinois.org, www.pwsausa.org or contact Terry Guinn at TerryLGuinn2@gmail.com