By the age of two months, Ryan Mottillo began to show signs of Prader-Willi syndrome (PWS). He was exceptionally demanding and prone to meltdowns, especially when he was denied something he wanted.
“Before Nexus, everything was a struggle,” said Melissa Tatar, Ryan’s mother. “He couldn’t use words to describe why he was upset, so he would act out. He knew how to calm himself down, but he could not apply it.”
Unlike many families of children with PWS, food security was never the primary struggle. Melissa locked food away, maintained a strict food schedule, and ensured Ryan knew when to expect his meals. She always included plenty of fruits and vegetables in his diet and regulated his caloric intake. The main struggle was Ryan’s inability to communicate his emotional state.
At Nexus, Ryan developed a new set of tools for managing difficult emotions and communicating with others. Now, when he’s feeling frustrated, he breathes deeply, removes himself from the room, and takes time to calm down. The development of behavioral coping skills for Prader-Willi syndrome is a hallmark of Nexus’ Jump Start Program.
“After Nexus, he’s able to use his coping skills,” said Melissa. “When he’s ready to talk, he’ll use words to let you know how he’s feeling.”
One of Ryan’s favorite aspects of the Jump Start Program was the ability to socialize with other children experiencing similar struggles. He loved engaging in playground activities, playing board games, participating in Zumba exercises, and encouraging other patients.
“He’s Mr. Social Butterfly,” said Melissa. “He liked being a mentor and helping the other kids get motivated. Ryan didn’t get to do much socializing before Nexus, and he was so grateful for that.”
During his time at Nexus, Ryan loved engaging with both other patients and staff.
“The Nexus staff are very caring and you can tell they love their jobs,” said Melissa. “They treat the kids like their own. Ryan came home with a whole new outlook on how to live with PWS.”
