A blood test confirmed Prader-Willi Syndrome at age seven. The support we received from the clinic helped us cope. Robert was given Growth Hormone injections, a new treatment for the syndrome. Growth Hormones helped him grow taller and gain more muscle mass, most people with PWS are quite small. 

 Robert developed scoliosis. Gillette was able to provide treatment. We began seeing Dr. Lonstein an orthopedic specialist. He recommended bracing, to delay surgery. The brace, manufactured at Gillette's Assisted Tecnology was vest-like in appearance, velcro straps in the back. Bracing delayed surgery for three years. A full spinal fusion surgery took place at age twelve. We were confident in our Doctor, but overwhelmed by the severity of the surgery. The severe curve was "S" shaped, ninety-seven degrees at the top, ninety-three degrees on the bottom. 

The surgery was hugly successful. Robert never complained of pain, people with the syndrome are often oblivious to it. He was convinced, after hearing that there were screws in his spine that they needed to be removed. He would repeat this whenever we visited, perseveration, repeating an idea or word is also part of the syndrome.

 Dr Ainslie, nutritionists, and an amazing phycologist Dr Constance McLoud helped keep us on track during the teen years The syndrome can become more difficult during puberty. At eighteen Robert became increasingly detached from reality and was hospitalized for mental illness. Gillette's clinic nurse Carolyn Jones was able to provide a resource. She suggested a group home called Stepping Out. Their program helped get him back on track.

Robert continued to be cared for at Gillette until his twenties.  I recommend the PWS clinic to anyone who has a child with the syndrome.  I don't know how we would have coped with this challenging syndrome without them.

Robert is now twenty-eight and engaged in life. His weight is low and he exercises daily. PWS clinic staff would be proud to see him speed walking and competing in 5K races. We still face challenges but as parent's we are no longer the "Bad Guys," day to day behaviors are handled by the staff at Stepping Out!