Facebook | Grayson's Story

Boy Born With Unique Genetic Disorder Called 'Miracle' Six Years Later

Considering all he's been through, it's no wonder that Grayson Smith is called a "miracle" by both his family and doctors.

Grayson Kole Smith was born on February 15, 2013.

Facebook | Jenny Smith

He was the third baby born in this family of four children, joining his older siblings Jaycee, 16, and Alex, 12, and becoming big brother to the newest addition, Slate, three.

Before Grayson was born, everything appeared to be going well.

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There was no cause for concern or indications that anything might go wrong. But that changed almost immediately after Grayson was born.

"I was shocked and devastated. I knew straight away that things were not normal," Grayson's mother Jenny said, as Fox News reported.

Grayson had been born with a genetic disorder so rare, doctors don't know of any other cases.

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His skull was misshapen, his eyes were swollen, and he was struggling to breathe. Tests would show bone deformities, a gap in his skull, and a hole in his heart, and he was blind and deaf as well.

And it's all a mystery to both Grayson's family and to doctors.

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"Of course, I was still in love with him but we were very scared," Jenny said. "We have no idea of the cause or why he was born like this. Doctors have done genetic testing, DNA tests but they all came back fine."

Grayson's doctors had little faith that the boy would survive long after his birth.

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He was put on end-of-life care, and his parents were advised to say their goodbyes and prepare for the very real and likely chance that their newborn baby wouldn't make it.

"We thought he was going to die and had made plans for his funeral," Smith said. "It was awful."

However, Grayson ultimately defied the odds that were seemingly stacked against him and made it through.

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"He is so special to us and is our little miracle," Smith said. "He is a blessing. He is the candle that never goes out no matter how hard you blow."

Doctors even began referring to his condition as "Grayson's syndrome."

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"We have always been hopeful of finding another child like Grayson but we’ve never been able to find anyone like him," Jenny said. "He is the only person ever known to have all of these birth defects. There is no one else to compare him to."

Although doctors didn't expect Grayson to live beyond his third or fourth birthday, he's still going strong at age 6.

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Which is not to say that it has been easy. Already in his short life, Grayson has undergone 36 procedures, some of them life-threatening, like one in which parts of his ribs were used to close the gap in his skull.

However, Grayson has persevered through it all.

Facebook | Grayson's Story

He's even made a remarkable comeback, regaining both his vision and his hearing.

And, for his followers on the Facebook page his parents use to keep friends, family, and well wishers updated, Grayson made a video in which he recited the Pledge of Allegiance.

Unfortunately, Grayson is far from out of the woods yet.

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Right now, the curve in his spine is putting pressure on his lungs and stomach, so he'll have to undergo yet another procedure.

His next surgery is called VCR, which stands for Vertebral Column Resection For Severe Spinal Deformity.

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In a Facebook post announcing the upcoming procedure, Smith explained that doctors will remove "segments of the spine including the body of the vertebra and the posterior elements, which include the lamina, transverse process, and ribs (for procedures in the thoracic spine)."

"Sounds simple but is complicated due to Grayson's other health challenges," Smith wrote, "however we will get thru it!"

His parents also know that his condition can change at any time.

Facebook | Grayson's Story

"I cry a lot when I see him in pain and I do wish I could take the pain away from him," Jenny said. "It has been one big emotional struggle for us and we know so much can happen at any time. Grayson's condition can change in a matter of hours."

h/t Fox News

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