CHARLOTTE, NC (WBTV) - There is no other child like Savannah Smith noted in medical history. Take that sentence in for a minute.
"Savy", as she's called, was born February 24th, 2010 in Charlotte. Her mom was also born in Charlotte, one of those unique born-and-raised Charlotteans.
"We had no idea Savy had any medical issues at birth," mom Carol said. "But after she was born, they told us she wouldn't make it through the night. I didn't even get to see her. She was immediately transported to NICU at Novant Health Hemby's Hospital (Presbyterian Hospital at that time). They gave her a less than 5% chance of survival."
She's beating those odds, now fighting and inspiring at the age of seven.
AND, she's not just beating the odds of one rare syndrome, but two. Both totally separate. Both genetic.
The first is called Pfeiffer Syndrome with Craniosynostosis. It occurs once in every 100,000 births.
The second is called Mosaic Turner Syndrome. It's only found in females. Savannah is even more rare being Mosaic because it means she has only half the "X" present in the XX chromosomes.
Pfeiffer Syndrome causes premature fusion of the bones and skull. MRI's reveal ALL the bones in Savannah's skull were fused. Both of her elbows are fused also, which means they're bent at a 45-degree angle. She has no ligaments so there nothing can surgically correct the problem.
"Also with Pfeiffer, the eyes prolapse," Carol said. "Savannah's eyes would actually come out of a socket from pressure whenever she would cry. She had her first eye surgery at two weeks old, and has since had additional surgeries to keep most of her eyelids closed, to keep her eyes in place."
With all this going on, Savy had twelve surgeries in her first ten months of life.
At the age of seven, she is now up to a total of 37 surgeries.
As for the bright side of sweet-spirited Savy…
"Savannah has the best attitude and simply loves life!" Carol says. "She loves everyone. Everyone! And she expects them to love her back. Unfortunately that doesn't always happen to a child with craniofacial differences. Plastic surgery is considered a medical necessity for our little girl."
Carol said there are plenty of doctors in their lives – and all consider themselves part of "Team Savannah".
"These wonderful humans have stood by us every step of the way," Carol said. "Awesome medical professionals, but also incredibly loving people."
Why is Carol wanting you to know about her daughter?
"Because I want to be an advocate for special needs kids with craniofacial differences," she said. "As a mom I always protected Savannah and didn't want to go out in public where people would make fun of her or ask me a million questions. I'm now in a place where I want to help teach people that we are all different. I think that's my purpose, and definitely Savannah's purpose, here on Earth. We want to make the world a better place where ALL people are accepted no matter what they look like."
Beautiful message. Beautiful email.
Thank you for sharing your daughter, Carol. Great way to start a Wednesday.