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"Live Life Full"
diagnosed with Prader Willi Syndrome, a rare genetic disorder
High School Team:
Five years ago, Joseph was diagnosed with Prader Willi Syndrome, a rare genetic disorder. PWS is caused by a lack of a genetic material in a particular region of chromosome 15. Symptoms of PWS present a wide spectrum of challenges and are thought to be caused by a dysfunction of a part of the brain called the hypothalamus. One of the stages is marked by the children having an insatiable appetite, since they lack the normal cues to “feel full”. Other issues include failure to thrive during infancy, cognitive challenges, motor delays, growth hormone deficiency/short stature, sleep disturbances, high pain threshold, infertility, morbid obesity, and increased risk of mental illness. Joseph is an amazing little boy. We were told by a doctor after his diagnosis that he would not have much of a life and there was nothing they could do. Since it is so rare it does not get the exposure that many other genetic conditions do. Joseph has been in therapies since he was 2 months old, doing OT, PT, Speech and horse therapy. He has worked so hard to move past his challenges and we are so proud of him. Joseph has to follow a strict diet to make sure he stays healthy and safe. Our hope and dreams for Joseph is for him to be able to live an independent life and to “Live Life Full”.