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Grayson Kole Smith, now six (recently pictured), was born with serious malformations and could not see or hear, but DNA tests could not determine exactly what was wrong with him

A boy who is born seriously disabled has several problems, so that rare doctors have named his condition after him.

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Grayson Kole Smith from Alabama has caused Grayson syndrome.

He was born with missing a third of his skull, with a hole in his heart, blind, deaf, and with serious deformities in his body.

Doctors expected him to die young, but he underwent 36 operations in his six years of life and even learned to speak.

His parents said they could not find any evidence of other children in the same situation as their son and say he has a & # 39; beam of light & # 39; is.

Grayson Kole Smith, now six (recently pictured), was born with serious malformations and could not see or hear, but DNA tests could not determine exactly what was wrong with him

Grayson Kole Smith, now six (recently pictured), was born with serious malformations and could not see or hear, but DNA tests could not determine exactly what was wrong with him

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Parents Jenny and Kendyl Smith, from the city of Ranburne, were destroyed when they were told that their son would probably not live for more than a month.

He was immediately put to the end of life when he was born and then expected to die during one of his many operations.

Mrs. Smith, who is 39 and has three other children, said: & # 39; We have always been hopeful to find another child like Grayson, but we have never been able to find someone like him.

& # 39; He is the only person who is known to have all these birth defects. There is no one else to compare him to.

& # 39; He is a ray of light and always laughs, no matter how much pain he has. It was so hard for us to deal with. We pray for him every day. & # 39;

Doctors could not diagnose Grayson with a specific condition because they had never seen anyone with the same disability he has, according to his mother Jenny Smith

Doctors could not diagnose Grayson with a specific condition because they had never seen anyone with the same disability he has, according to his mother Jenny Smith

Doctors could not diagnose Grayson with a specific condition because they had never seen anyone with the same disability he has, according to his mother Jenny Smith

Parents Kendyl and Jenny have three other children (pictured Jaycee, now 16, Alex, now 12, and Grayson when he was a baby) and had no signs that Grayson would be unhealthy before he was born on February 15, 2013
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Parents Kendyl and Jenny have three other children (pictured Jaycee, now 16, Alex, now 12, and Grayson when he was a baby) and had no signs that Grayson would be unhealthy before he was born on February 15, 2013

Parents Kendyl and Jenny have three other children (pictured Jaycee, now 16, Alex, now 12, and Grayson when he was a baby) and had no signs that Grayson would be unhealthy before he was born on February 15, 2013

Grayson was born on February 15, 2013 after a normal and healthy pregnancy.

His parents, whose other children Jaycee, 16, Alex, 12, and Slate, three, were healthy, said they had no reason to suspect that something was wrong.

But Grayson was born hardly breathing, with puffy eyes, a deformed head and & # 39; scary & # 39; facial malformations, his mother said.

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Grayson fights for his life and was transferred from the small hospital in Georgia, where he was born in a larger hospital in Alabama.

Mrs. Smith said: & I was shocked and destroyed. I immediately knew that things were not normal.

& # 39; Of course I was still in love with him, but we were very scared. His eyes were swollen, he was very small and he had a huge bulge on his head.

& # 39; We have no idea of ​​the cause or why he was born that way. Doctors have done genetic testing, DNA testing but they all returned well.

& # 39; He did not fully match the criteria for everything for which he was tested. Nobody knew what it was.

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& # 39; We thought he was going to die and made plans for his funeral. It was awful. & # 39;

Grayson has had 36 operations so far in his short life, 26 of them on his head. Doctors thought that if he didn't die in childhood, one of the operations would have killed him, but he continued to survive

Grayson has had 36 operations so far in his short life, 26 of them on his head. Doctors thought that if he didn't die in childhood, one of the operations would have killed him, but he continued to survive

Grayson has had 36 operations so far in his short life, 26 of them on his head. Doctors thought that if he didn't die in childhood, one of the operations would have killed him, but he continued to survive

Although Grayson is severely disabled, his parents say he has a & # 39; light beam & # 39; and & # 39; is a popular child and has many friends & # 39;

Although Grayson is severely disabled, his parents say he has a & # 39; light beam & # 39; and & # 39; is a popular child and has many friends & # 39;

Although Grayson is severely disabled, his parents say he has a & # 39; light beam & # 39; and & # 39; is a popular child and has many friends & # 39;

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The doctors discovered that Grayson had seven bone malformations, a huge opening in his skull, a hole in his heart, apnea, and unable to see or hear.

Although his eyes and ears started to work as he got older, most of the disorders he has are degenerative and get worse as he gets older.

He has a curvature in his spine, which means that his internal organs are crushed, he cannot walk and he has difficulty breathing.

Doctors predicted that he would never make it after three or four years, but now he is six. But during that time he had 36 operations, including 26 on his head.

The operation to close the hole in his skull caused surgeons to make him a new one using parts of his ribs.

& # 39; We were told that he would not survive the operation and we accepted that he would probably die, & # 39; said Smith.

Mrs. Smith, 39, said she immediately knew that something was wrong with Grayson when he was born, because he had a bulging lump on his head and his face was deformed. She said: & # 39; Of course I was still in love with him, but we were very scared & # 39;

Mrs. Smith, 39, said she immediately knew that something was wrong with Grayson when he was born, because he had a bulging lump on his head and his face was deformed. She said: & # 39; Of course I was still in love with him, but we were very scared & # 39;

Mrs. Smith, 39, said she immediately knew that something was wrong with Grayson when he was born, because he had a bulging lump on his head and his face was deformed. She said: & # 39; Of course I was still in love with him, but we were very scared & # 39;

The future is unknown to Grayson, portrayed with baseball player Freddie Freeman from Atlanta Braves, but his mother says that every effort to care for him has been worth it because the family was able to spend time together

The future is unknown to Grayson, portrayed with baseball player Freddie Freeman from Atlanta Braves, but his mother says that every effort to care for him has been worth it because the family was able to spend time together

The future is unknown to Grayson, portrayed with baseball player Freddie Freeman from Atlanta Braves, but his mother says that every effort to care for him has been worth it because the family was able to spend time together

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However, Grayson's parents said that every operation, hospital trip and hourly wage is worth it if it means that the family spends as long as possible together.

His mother added: & Grayson doesn't let his condition stop him. He sees himself no different and we all treat him just like a normal person.

& # 39; He is a popular boy and has many friends. He knows that everyone is different. But he is special in his own way.

& # 39; I cry a lot when I see him hurt and I wish I could take the pain away from him.

& # 39; It was a major emotional struggle for us and we know that so much can happen at any time. The condition of Grayson can change within a few hours.

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& # 39; The most important thing for us is that Grayson can lead a happy life. Every day counts for something and every day is special for him. & # 39;

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