CANARSIE — Watching her son Noah shuffle across the living room floor, iPad in hand and grinning ear to ear, Yamileth Johnson cannot imagine not having the nearly 6-year-old boy in her life.
However, if Johnson had given in to the pressure she faced from her doctors when she was pregnant, warning her of the difficulties he would face in his life, she would not have Noah.
With his diagnosis of Down syndrome discovered before he was born because of genetic testing and myriad dangerous health conditions, Johnson’s doctors told her she should terminate the pregnancy.
Despite the mounting pressure her doctors put on her — including even booking an appointment for her to have an abortion without her consent — Johnson turned to her Catholic faith for support.
“I felt like God gave me this baby to serve a purpose, and I have to have this baby. I have to figure this out. This is my assignment,” she said.
Now, Noah Jacob is a model, working with New York Models Kids, and has amassed nearly 100,000 followers on Instagram (@supernoahjacob). He has donned the title “Super Noah,” and together, he and his mother work to educate people on the difficulties associated with Down syndrome — and how all those battles are worth it.
“Noah’s page is about motivating and educating. It’s really about letting people know the ups and downs of Down syndrome, and what we go through,” she said.
Through social media, people can follow Noah’s journey from birth, when he had two open heart surgeries in the first six months of his life, to today, as he walks runways and models for renowned brands, most notably Target. His face is displayed in stores across the country. Fans would send his mother photos of Noah’s face shown in Target stores from all over.
“It was amazing. I couldn’t even believe it. You know ‘Where’s Waldo?’ It was like, ‘Where’s Noah?’ ”
Johnson says she was terrified throughout her pregnancy, especially when hearing all the worst-case scenarios her doctors presented her with. They warned her that he would be born without functioning kidneys, that there was a good chance he would only survive for two hours after birth, and that the quality of his likely short life would be cruel.
One day while pregnant, she broke down into tears while in the shower, praying to God that her son would survive.
“I said, alright, here’s the deal. I am going to have this baby. You’re giving me this child. I’m going to take him any way he comes. But I need you to give me the strength to get through it. I need you to help me because I can’t do this without you. And that was the last time I cried until he was born,” she said.
Now, Noah has not had a major health episode in more than a year. While he only has one functioning kidney and is nearly entirely nonverbal, Johnson sees the personality and love her son shares with the world through his smiles and laughter.
“Fear will have you thinking the worst. Fear will have you saying yes to things you don’t want to say yes to,” she said.
Johnson was left to raise Noah on her own when he was 6 months old, and, without her husband, she became his sole provider. She now has a boyfriend who has stepped up to become Noah’s “poppa.”
The boyfriend, Tyrone Johnson, dated Noah’s mother more than 20 years ago, and they reconnected after his birth.
“Noah is a beautiful kid. I adore him,” he said.
Supporting Noah through hospital stays and health battles completely upended Yamileth Johnson’s life, and she does not fail to recognize the emotional issues she and other parents face when supporting children with disabilities.
Before Noah was born, she owned a spa near the Brooklyn Botanical Garden, but she was unable to continue maintaining the business and raise her son at the same time.
“You deal with a lot of things. I had a business. I had a career, and I had to put that on hold. I had to kind of figure life out,” she said.
Johnson also wanted to step up and help other mothers who are still struggling with those terrifying hospital stays. About two years ago, she put her faith into action and established the nonprofit Choosing Noah, which provides education, support, and services to expecting parents and families of children with Down syndrome.
“For any mom that’s out there who thinks that this is really hard, I’m not going to lie and say that it’s not. But it’s worth it. It’s worth every tear. It’s worth every sleepless night. It’s priceless,” she said.
Johnson is looking to help other moms of babies with down syndrome by connecting them with the support groups and resources she didn’t have during her pregnancy. To support her cause you can donate at ChoosingNoah.com.