Julian and Joy's son, Jener, was diagnosed with a rare genetic disorder called Prader-Willi Syndrome (PWS) which will, in the long-term, cause 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. The compulsion to eat non-stop is overwhelming and will require constant supervision.
It is also accompanied with low muscle tone and behavioral issues. Frequent doctors visits with out-of-state specialists and family doctors, routine blood work, and sleep studies will be a part of their everyday life. He will need to see a specialist in Florida yearly. Julian and Joy will need to attend PWS conferences to keep themselves up to date on the practices and medication for this rare disorder. Also Jener requires physical, occupational and speech therapy. This will continue throughout his childhood and he will be required to take GH (growth hormone) shots for life. The reason for raising money is to benefit research. Jener's parent's are extremely hopeful that with the research being done they will find a cure for the hunger! You can help make a difference in Jener's life and many others that will and do endure this feeling of starvation! Come be a part of helping them to live life "FULL"!
