Doctors Said Boy With Rare Disorder Wouldn’t Survive. Grayson Just Turned 6

National   |   Micaiah Bilger   |   Jul 12, 2019   |   12:58PM   |   Birmingham, Alabama

Just weeks after Grayson Smith was born, he was sent home on hospice, expected to die.

The Alabama boy was born with a long list of abnormalities, and doctors told his parents not to expect their son to live long, Fox News reports. First, they thought he might live a few weeks and, then later, no more than a few years.

That was in February 2013.

Today, Grayson is 6 years old, and his parents, Jenny and Kendyl Smith, believe his life is a “miracle.”

“We have always been hopeful of finding another child like Grayson but we’ve never been able to find anyone like him,” his mother said, noting that they still do not fully know what Grayson’s condition is. “He is the only person ever known to have all of these birth defects. There is no one else to compare him to.”

She said her pregnancy with Grayson, the youngest of four children, was normal. Only after he was born did they realize that something was terribly wrong.

“As soon our baby made his grand entrance, we waited for the sound of his first cry. And waited. Nothing. My heart sank,” she wrote on the family’s Facebook page. “The first look a this face he was my precious gift from God. However, I knew something was terribly wrong. his face was severely swollen.”

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“Of course, I was still in love with him but we were very scared,” Smith continued. “His eyes were swollen, he was very small and he had a huge bulge on his head. 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.”

Quickly after he was born, he was transferred to another hospital in Atlanta, Georgia. His mother said they joined him there several hours after she gave birth; she insisted, against doctors’ recommendations, that she be discharged so she could be with her son.

In Atlanta, doctors gave them a long lost of Grayson’s anomalies and predicted that his chance of survival was zero, Smith said.

Two weeks later, Grayson was discharged to hospice in their home, she continued. Then, he began to do things that doctors thought he could not.

His mother wrote:

When Grayson reached 5 weeks old Kendyl and I went with our gut and removed his feeding tube and introduced the bottle. This was against doctors advice as they said he would aspirate and would not be able to suck anyways. Grayson proved them wrong. He not only takes a bottle but he has not had the severe apnea spells he did since the feeding tube was removed. Over the next weeks to come we also found Grayson can hear and only has minor hearing loss.

Since then, Grayson has undergone dozens of procedures to fix a hole in his heart, bone deformities and other problems.

Initially, doctors thought he might be blind and deaf, but his parents said he can both see and hear. He can speak, too. On Independence Day, his parents posted a video of him on Facebook saying the Pledge of Allegiance.

“I cry a lot when I see him in pain and I do wish I could take the pain away from him,” his mother told the news outlet. “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.”

The Smiths said they do not know how long Grayson will live, but they still believe his life is a “miracle.”