The day-to-day work at the Center for Disability Services is rewarding, but on occasion, we witness something uplifting. This could be a child’s first step facilitated by aquatic therapy, an adult striking a new path to independence through job placement, or one of the other many triumphs witnessed in our programs and services. One such story is the incredibly heartwarming tale of Octavius, a young boy born with several obstacles before him, but none stronger than hope and determination.
Octavius — or “Octo” as he is affectionately called — is a three-year-old patient at St. Margaret’s Center. He was born with achondrogenesis, a rare and severe genetic disorder that affects skeletal and other development. It is a form of dwarfism with life-threatening conditions. Sadly, many infants born with achondrogenesis die shortly after birth due to respiratory failure. Those who live are often faced with an uphill battle — and living their childhood in a hospital setting.
Octavius’s story started the same as others with his condition. He was born at Crouse Hospital in December 2015 and remained admitted until November 2016, when we entered the care of St. Margaret’s. Since then, Octavius has shown his resilience and determination to fight the constraints of achondrogenesis.
“Octo came to us fully ventilator-dependant. He’s been able to make great progress, and is completely off the ventilator today,” noted Maria Mastroianni, Social Worker at St. Margaret’s. “This little guy has defied all of the odds.
His progress away from the ventilator is cause for celebration, but the bigger news is what followed. After spending his entire life in a hospital or skilled nursing setting, Octo went home for the very first time. In June 2019, Octo got to start his new life, at home with his grandmother in Endicott. And, in addition to the boy’s strength and determination, his grandmother’s persistence helped make this day possible.
Ever since the day Octo became a patient at St. Margaret’s, his grandmother has been a strong presence. She visited her grandson weekly without exception — a five-hour round trip by cab. Her weekly presence helped solidify the family support necessary for Octo’s transition to at-home care. And since day one, Octo’s grandmother asked, “what do we need to do to get this boy home?” She was determined to see that Octo had a life beyond his condition.
Octo's challenges are, of course, not over. He will require services at home, and medical specialists as part of this schooling. But, the ability to live at home is a massive step for the child — one that promises to guide him in overcoming more hurdles. At home, he’ll be able to enjoy some of his favorite activities, such as playing “head, shoulders, knees, and toes,” having fun with his turtle toy, and watching movies and shows on his mini-DVD player — and he’ll get to explore more fun with his new step towards greater independence. And, he’s still just three! Imagine the world ahead of this young inspiration!
Some of the services from St. Margaret’s that helped Octo in his journey included occupational therapy and respiratory treatments, but the family-centered culture and staff determination may be what helped the most. At St. Margaret’s, staff never give up hope. Octo’s story is inspiring for the care team and the community. It is an example of how a child with even the bleakest outlook can fight and win. Octo has shown that every victory counts and that the determination of patients, staff, and family can make an incredible impact.