Man With Trisomy 13 to Celebrate 20th Birthday

May 19, 2022 – 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.

Thus began an incredible story of Lloyd defying all the odds. While he stayed in the hospital for 2 weeks, his breathing soon began to stabilize and he could eat by mouth. With that, he was discharged and allowed to go home.

“I was this inexperienced first-time mom who had been told to watch for all sorts of things, like making sure he didn’t turn blue at night,” she says. “I spent so many sleepless nights, but I was dedicated to Lloyd.”

Then, when Lloyd was 6 months old, Nunez made another important choice.

“I decided that I wasn’t going to live each day as if he was going to die,” she says. “I decided, instead, to enjoy him every day.”

But many health complications still came about, including a serious intestine issue at 8 months, at which point Lloyd’s doctors suggested waiting until he was a year old to have surgery.

Lloyd was able to get through the procedure but, while he was in the recovery room, he stopped breathing.

In December, when Lloyd was diagnosed with COVID-19, Nunez started worrying all over again.

“Seeing him in the ICU, all I could think of was ‘please don’t make my son suffer,’” she says. “If he goes, I want him to go in peace, and I don’t want to see him in a machine and suffering.”

But Lloyd once again defied the odds against him and came home again. He has since faced yet another health challenge: He recently had a pelvic fracture.

“When I saw the orthopedist, he told me that Lloyd has a bone deficiency and that his bones don’t have enough room to grow,” she says. “I’m afraid this will be the beginning of a new journey.”

How This Mom Finds Strength

While Nunez doesn’t go to a support group or speak with a mental health professional about all that she’s juggling, she says she draws strength from Lloyd himself.

“I’m very private and I come from a culture where you don’t want people feeling sorry for you,” she says. “But I want to give Lloyd everything – he goes to school, we go to church, he had a quinceañera when he was 15, we’ve been to Disney, and we’ve both gotten on a roller coaster. I haven’t limited his life.”

She also draws comfort from her daughters.

“Everyone calls him ‘Baby Lloyd,’” she says. “My girls come right home from school, wash their hands, and throw themselves on his bed and watch TV with him. They also worry about him a lot. When he goes to the hospital, they suffer more than I do.”

In the end, Nunez hopes her story inspires others to think beyond a prognosis.

“Don’t lose hope,” she says. “I want people to feel hopeful when they read about Lloyd. He’s going to be 20 years old, and no one ever believed he would be here today … I feel blessed.”