Disabled boy’s condition is so rare doctors named it after him

Boy, six, who was born severely disabled, blind and deaf has a condition so rare it has been named after HIM

• Grayson Kole Smith’s disabilities have given rise to ‘Grayson’s syndrome’
• His parents say doctors have been unable to diagnose his collection of issues
• He was born deformed and wasn’t expected to live more than a month
• But the six-year-old has now survived 36 operations, 26 of them on his head

A boy who was born severely disabled has a variety of issues so rare doctors have named his condition after him. 

Grayson Kole Smith, from Alabama, has given rise to the condition Grayson’s syndrome.

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

Doctors expected him to die young but he has endured 36 operations in his six years of life and is even learning to speak.

His parents said they haven’t been able to find any evidence of any other children in the same situation as their son and say he is a ‘ray of light’.

Grayson Kole Smith, now six (pictured recently) was born with severe deformities and unable to see or hear but DNA tests could not pin down exactly what was wrong with him 

Parents Jenny and Kendyl Smith, from the town of Ranburne, were devastated when they were told their son wasn’t likely to live longer than a month.

He was put straight onto end-of-life care when he was born and then expected to die during one of his many surgeries.

Ms Smith, who is 39 and has three other children, said: ‘We have always been hopeful of finding another child like Grayson but we’ve never been able to find anyone like him.

‘He is the only person ever known to have all of these birth defects. There is no one else to compare him to.

‘He is a ray of light and is always smiling, no matter how much pain he might be in. It has been so hard for us to deal with. We sit and pray for him every single day.’

Doctors couldn’t diagnose Grayson with a specific condition because they had never seen someone with the same collection of disabilities he has, according to his mother Jenny Smith

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

Grayson was born on February 15 2013 following 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 anything was wrong.

But Grayson was born barely breathing, with swollen eyes, a malformed head and ‘scary’ facial disfigurements, his mum said.

Fighting for his life, Grayson was transferred from the small hospital in Georgia where he was born to a bigger hospital in Alabama.

Ms Smith said: ‘I was shocked and devastated. I knew straight away that things were not normal.

‘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.

‘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.

‘He didn’t fully fit the criteria for everything he was tested for. No one knew what it was.

‘We thought he was going to die and had made plans for his funeral. It was awful.’

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

Although Grayson is severely disabled his parents say he is a ‘ray of light’ and is ‘a popular kid and has lots of friends’

Doctors discovered Grayson had seven bone deformities, a huge gap in his skull, a hole in his heart, apnoea, and was unable to see or hear.

Although his eyes and ears started to work as he grew older, most of the conditions he has are degenerative and are getting worse as he grows up.

He has a curve in his spine, meaning his internal organs are being crushed, he can’t walk, and he has difficulty breathing.

Doctors predicted he’d never ever make it past three or four years old, but now he is six. But during that time he has had 36 surgeries, including 26 on his head.

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

‘We were told he wouldn’t survive the operation and we accepted that he was probably going to die,’ Ms Smith said.

Ms Smith, 39,said she immediately knew 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: ‘Of course, I was still in love with him but we were very scared’

The future is unknown for Grayson, pictured with Atlanta Braves baseball player Freddie Freeman, but his mother says all the strain of caring for him has been worth it because the family has been able to spend time together

Grayson’s parents, however, said every surgery, hospital trip and hour of care has been worth it if it means the family get to spend as long as possible together.

His mother added: ‘Grayson doesn’t let his condition stop him. He doesn’t see himself as different and we all just treat him as a normal person.

‘He’s a popular kid and has lots of friends. He knows everyone is different. But he is special in his own way.

‘I cry a lot when I see him in pain and I do wish I could take the pain away from him.

‘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 most important thing to us is Grayson is able to live a happy life. Every day counts for something and every day is special for him.’

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