Ryan had a difficult start in life. Born with Prader-Willi syndrome, a rare genetic disorder characterized by weak muscles, feeding difficulties, inhibited growth and delayed development, he spent almost three months in a neonatal intensive care unit. In September 2014, Cathy Gutman, Ryan’s mother, enrolled him in Project Explore at the Valhalla Child Development Center, making him the first child with Prader-Willi to attend the school. Ryan was provided with a full array of speech, occupational, and physical therapy services. Caitlyn de Simone, Ryan’s one-on-one aide, worked with him every day.
Ryan has significant medical issues including sleep apnea and constipation. Like other kids with Prader-Willi, he doesn’t run fevers or vomit, so it was hard for staff to determine how he was feeling or what his needs were. Despite these challenges, Cindy said that Valhalla staff more than rose to the occasion. Danielle Davis, Ryan’s speech therapist, undertook significant research in order to learn about Prader-Willi syndrome to better serve Ryan.
When Ryan first enrolled at Valhalla he was nonverbal. Today, he speaks in complete sentences and “talks up a storm.” His assessments in cognitive, social, emotional and motor functioning have risen significantly to age-appropriate. He has many friends, and attended a number of birthday parties in 2015.
“Ryan’s amazing teachers found a way to overlook his delays and help to unlock his cognitive skills,” Cathy said. “Everybody at Valhalla knows him and loves him, and he has a lot of eyes looking out for him every day.”
Ryan is looking forward to attending kindergarten in September 2016.
