When you speak to Santiaga Nunez, right away, you can sense her deep and unwavering devotion to her son, Lloyd Tyler Rochez, born in 2002 with trisomy 13, a genetic disorder that can involve severe learning problems and health woes that affect nearly every organ.
Lloyd's diagnosis was confirmed shortly after he was born, when his doctors noticed that his facial features weren't measuring right for a baby of his size, he had an extra finger on his left hand, and his fingers were joined on the right. His heart was also on the right side of his chest instead of the left. When he had breathing issues, he was quickly rushed to the neonatal ICU (NICU) in the New York City hospital where he was born.
Nunez wasn't sure exactly what was wrong with her newborn, but the next morning, a genetics expert came to her room to discuss her medical history and whether anyone in the family had Down syndrome. That same health care provider told her that the next step was to run some tests and do more bloodwork.
Four days later, when Nunez was told that Lloyd had trisomy 13 and was likely to live for only 2 weeks, she was unable to come to terms with the news.
