Meet the miracle. Celebrating the 20th anniversary of the man with the 13th trisomy

May 19, 2022 – When you talk to Santiago Nunes, you can immediately feel his deep devotion to his son, Lloyd Tyler Roches, born in 2002. trisomy 13, a genetic disorder that can involve serious learning problems և health problems that affect almost all organs.

Lloyd’s diagnosis was confirmed immediately after his birth, when doctors noticed that his facial features were not measured correctly. child: In his size, he had an extra finger on his left hand, and his fingers were connected on his right. His heart was also on the right side of his chest instead of his left. When she had trouble breathing, she was rushed to the New York City Hospital ICU (NICU) where she was born.

Nunez was not sure what exactly was with her newbornbut the next morning the geneticist came to his room to discuss his medical history, whether anyone in the family Down Syndrome. The same doctor told him that the next step was to do some tests, to do more bleeding.

Four days later, when Nunez was told that Lloyd had 13 trisomies և he would probably live only two weeks, he could not come to terms with the news.

“I was told so much information at once,” recalls Nunez, now 42, who is the mother of two daughters, 8 to 10 years old. “I had just turned 22 և, this was my first experience. Birth. “I can not even remember everything the doctors told me.”

But she remembers her doctor telling her something about faith.

“After he tried to explain to me the 13th trisomy, the negative side and the prediction, in the end he said: “I do not know, do you believe in some supernatural being, but if you want to ask someone for a miracle, I: would you recommend doing that? Pray for your miracle և you can receive it. ”

Prepared for the worst, Nunez, who now works in Martinsburg, USA, as a juvenile case manager coming to the United States, decided that he would be committed to providing the best possible care for his newborn baby, no matter how long he lived. .

Thus began the incredible story of when Lloyd contradicted all possibilities. While he was in the hospital for two 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 an inexperienced mother for the first time who was told she had to go back to various things, such as making sure the night did not turn blue,” she says. “I had so many sleepless nights, but I was devoted to Lloyd.”

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

“I decided I would not live every day as if he were going to die,” she said. “Instead, I decided to enjoy it every day.”

But many health complications still arose, including a serious bowel problem at 8 months of age, during which Lloyd’s doctors suggested waiting until he was one year old to have surgery.

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

“I started shouting, ‘My son is dying,'” Nunez recalls. “The nurses put me in a room. I thought I was there for 10 minutes, but I thought I was screaming forever.”
He soon learned that Lloyd had a confiscation. He spent the next 3 weeks in the hospital.

“It was our life,” he says. “He would have a respiratory system pneumonia, for example, և we were returning to the hospital. We were in and out, we were in and out. ”

But he kept believing that Lloyd’s health had largely stabilized since then. Nunez can take care of her at home on her own with family members helping from time to time.

And while Lloyd can not speak, he smiles, he laughs, when he is happy, he is silent, when he feels bad, when he wants to be alone, he sighs, says Nunez. He can stand, he crawls from place to place. She can not go to the toilet on her own, she is fed through a gastrostomy tube or G-tube.

In December, when Lloyd was diagnosed with COVID-19, Nunez began worrisome again and again.

“Seeing him in the ICU, all I could think about was, ‘Please do not make my son suffer,'” he said. “If he leaves, I want him to go in peace. I do not want to see him in the car. He will suffer.”

But Lloyd “once did not accept the opportunities against him” came home again. Since then he has faced one of his health problems. he recently had a pelvic fracture.

“When I saw the orthopedist, he told me that Lloyd had bone deficiency, that his bones did not have enough space to grow,” he said. “I’m afraid this will be the beginning of a new journey.”

How does this mom find strength?

Until Nunez goes to a support group or talks Mental health He says he gets strength from Lloyd.

“I’m very personal, I come from a culture where you do not want people to feel sorry for you,” he said. “But I want to give everything to Lloyd. He goes to school, we go to church, he had a quinser at the age of 15, we went to Disney, we both sat on a walk-in tray. I have not limited his life. “

She receives comfort from her daughters.

“Everyone calls her Baby Lloyd,” she says. “My girls come home from school right away, wash their hands, jump on her bed and watch TV with him. They are also very worried about him. “When he goes to the hospital, they suffer more than I do.”

After all, Nunez hopes her story inspires others to think outside the box.

“Do not lose hope,” he says. “I want people to feel desperate when they read about Lloyd. He will be 20 years old և No one ever believed he would be here today … I feel blessed. ”

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