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Devon was first diagnosed as having Pallister Killian Syndrome at 16 months after months of testing to see what was causing his delays. Now at 15, Devon is mister independent. He absolutely has found his voice, and uses it loud and vocally, but also helps us understand him better by using a speech device and some simple sign language. He has matured into being such a loving young man after so many early years of being in his “own world”. Now he wants to be in the middle of all family activities and is always up for great big bear hugs! I love the young man he is becoming! After years of trying to get his seizures under control, 2021 threw a new wrench into his health journey. In June, after months of losing weight, eating me out of house and home and peeing non-stop, Devon was diagnosed with Type 1 diabetes. After a Children’s Hospital stay to train mom and dad on his care, he settled in for a long summer of trying to put the weight back on. By September, we had not only put the weight back on but have now added more to it. Devon has adjusted well to getting four shots of insulin a day, but it took awhile to ensure his entire care team at school was on the same page. Devon loves to take car rides, go camping and on trips – anywhere he can GO, GO, GO. We absolutely adore him, his spirit and his fight.
