Amber Simone Chinn is a 19-year-old student at SUNY Buffalo who was born with a disorder that doctors said would leave her unable to breathe on her own or speak. Now, not only is she talking, she’s singing. In fact, when Amber was at a graduation party, she never thought an impromptu video recording of her singing would go viral. It did.
Amber was born with Left Craniosynostosis, a birth defect in which one or more of the joints between the bones of a baby’s skull close prematurely, before a baby’s brain is fully formed. A baby’s skull has seven bones. Normally, these bones don’t fuse until around age 2, giving your baby’s brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby’s skull, the sutures intersect in the large soft spot (fontanel) on the top of your baby’s head. Normally, the sutures remain flexible until the bones fuse.
Signs of Craniosynostosis include:
- A misshapen skull, with the shape depending on which of the cranial sutures are affected
- An abnormal feeling or disappearing “soft spot” (fontanel) on your baby’s skull
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- Slow or no growth of the head as your baby grows
- Development of a raised, hard ridge along affected sutures
- Increased pressure within the skull (intracranial pressure)
- The signs of craniosynostosis may not be noticeable at birth, but they become apparent during the first few months of your baby’s life.
After a surgery at the age of six months, Amber’s parents were told she would probably never talk.
She calls it a miracle that she was able to start breathing on her own and avoid having a tracheotomy. “I wouldn’t be able to have a voice at all, I wouldn’t be able to sing at all,” she said.
Now she’s singing around town and working with music producers to hone her talent even more. Amber’s also being an inspiration to millions after she was captured poolside singing a song by current hit singer, Jhene Aiko. A friend’s mom shared it on Facebook and YouTube and now there are over two million views and being seen all over the world.
“I’m so thankful. It’s hard to grasp,” Amber said. “I have confidence, but I never thought me sitting by the pool, a random video would be so viral.”
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