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Kyle’s Story

Kyle Thorson was born in Salt Lake City Utah on the 9th day of the 9th month in 1993. When he entered the world he was a very low tone fghting warrior that for 21 years has turned out to be one of the most loved individuals. Kyle is an enigma; you would have a hard time communicating with him because he has a very limited vocabulary; the words that he uses come and go like the wind. Being an enigma he must be observed for hours and hours. He is very intelligent; however, you wouldn’t see it until you study his behavior and pick up on the fact that he is a practical joker. He loves to throw things and unfortunately it includes more than just a ball or sock. His goal in the throwing is to elicit a laugh, or any reaction from his target. For 21 years he has been a true inspiration to many people. He has stolen many hearts and leaves a lasting impression upon the people he meets. Kyle has Phelan-McDermid Syndrome (PMS) and is a proud member of the Phelan-McDermid Syndrome Foundation (PMSF).

Kyle attended kindergarten through high school where he learned life skills and how to work with others; he is social and likes to sit and watch people, especially girls. During his educational years Kyle had many hours of therapy; the therapies he received are the normal mixture, occupational, physical and speech. Each hour he received was precious and helped him gain some skills that continue to help him. Our only complaint is it isn’t enough. For years we have attempted to maximize the therapies Kyle has received, knowing that most all end when school stops. Now Kyle is an adult and these services just don’t exist. Kyle would like to see PMS kids receive the maximum therapy available with continuing programs into adulthood. Most skills learned in therapies are perishable skills that need to be continued to be effective.

Kyle is currently living at home with his mom, dad and two older brothers. The entire family has been instrumental in the raising of our buddy. Kyle has been bounced all over the United States; his dad is a retired Army First Sergeant. He has been seen by many physicians. Kyle approaches each meeting with gusto and little fear. He has some bad issues that seem to come and go with his moods like many of his peers. Kyle has suffered through anger issues. He is currently on a medicine regiment to control his anger, aggression and seizures. He and his mom have educated many people about PMS. Kyle would like to see many more physicians (especially pediatricians) educated in the existence of PMS and get them to record or share their fndings; this is needed for other families so they can beneft from PMS interactions. Kyle’s wish is for more testing, more research and a shared database of knowledge so every PMS child and family can continue to share and learn together. Kyle also wishes to see therapies expanded and extending them through adulthood.

Kyle and his parents understand that the research and studies are normally directed toward the younger kids; however we also know that understanding a young adult like Kyle could show other families what they could expect. As our children age they present different problems and the research is lacking in the adult area. We continue to learn about Kyle every day; things like, he can communicate his wants and wishes if his audience would just stop, listen and observe. He asks for permission and in the absence of any indication that it’s OK, he will decide if it is worth executing, ignoring the panic of the people around him when he fgures out how the squirt handle works on the garden hose. That has become one of his joys. He laughs and enjoys it when others join in with their laughter.