“Alex” LIVED 22 years. He rocked our world and changed our lives from the moment he entered it. His legacy of influencing our behavior continues beyond death. We are just better people because of him. His smile and laughter, and his love of music, books, ketchup, food and his hot tub are the memories that rise to the top and push down all of the educational and medical struggles that were certainly present, requiring significant advocacy on his behalf.
Alex had vision and hearing loss, well-controlled g.e. reflux, short heel cords, and most seriously tetralogy of fallot, a heart condition that required two open heart surgeries. His cause of death is respiratory failure, most likely attributed to a cardiac arrest following a dental procedure, under general anesthesia. A big regret is not having determined which CdLS gene was identified for him.
Alex was well known in his community, having been included in the general education classrooms of his neighborhood school. His transition to adulthood services was well planned and successful, as he owned his own vending machine, volunteered in various community sites, such as a nursing home and local library. He also helped to bake and package organic dog treats for a local groomer.
He loved and was well loved in return. He is remembered by his parents and his two sisters each and every day.