NEW JERSEY (PIX11) -- Teddy and Tanesha Braithwaite said they now live with a renewed sense of purpose.
Cianna Grace, nicknamed "CC," is earning straight As in a fight against the odds.
"We've heard she won't make it past a day. We've heard she won't make it past a week. And here we are at 10 months," said Tanesha.
Teddy and Tanesha learned very early on in their pregnancy that CC carried an extra copy of the 18th chromosome.
Trisomy 18, also known as Edwards syndrome, is a rare and serious genetic disorder that affects roughly 1 in every 2000 births.
Historical survival rates are not promising; most babies do not live beyond the first two weeks of life, and fewer than 10% live beyond the first year -- typically due to major heart and/or lung defects.
The Braithwaites decided to go public with their story on March 18, which is Trisomy 18 National Awareness Day.
"In the early stages, it was really rough for us. But with God in the center of it all, she has been defeating the odds," said Tanesha.
Teddy added, "She's striving. Some hiccups here and there, but she's pushing through."
Kiana Siefkas is a certified genetic counselor at Seattle Children’s Hospital.
"I definitely think awareness of genetic conditions and rare disease as a whole, I would love to see change," said Siefkas. "There's a lot happening in genetics right now."
CC’s well-being involves around-the-clock care, which includes monitoring her heart rate, blood oxygen levels and feeding tube.
But Tanesha hopes more people will start talking about intervention, as in Trisomy 18-related corrective surgery, rather than just sitting back and accepting a terminal diagnosis.
"It's proven that these babies can do well with intervention. While each doctor visit they were preparing us for her death -- I was preparing for her life," said Tanesha.
Teddy and Tanesha are the first to admit this has been a difficult journey. But they say "it takes a village to raise a child," and CC is not just some other baby on the block. They have a great support network that includes an attentive team of doctors, as well as friends and neighbors who are with them one day at a time, every step of the way.
"Their strength is what's inspiring everyone. They're resilient, they're strong. It's a blessing to be part of their network," said Errol Gordon, who lives down the street. "From a call in the middle of the night, or the first thing in the morning, being there for them is what helps them, helps Cianna, helps us get through this process."
Tanesha also hopes her family’s journey can inspire others to see past the stats and embrace the hope CC gives them, as she approaches her first birthday.
"My hope is for these families to see this story and just know that there is hope. It will be tough. But just stand firm -- advocate," said Tanesha.
Teddy added, "We care for her. We love her. We pray for her and hope for the next day."
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