A six-year-old was born with such a rare disease that it has been named after him.
Grayson Kole Smith was born blind, deaf, missing a third of his skull, with a hole in his heart and with severe facial, spinal and cranial deformities.
His family says doctors put him on end-of-life-care and told his parents Jenny and Kendyl to say their goodbyes, predicting that he would die in a month.
However, Grayson defied the odds and is now six – and has baffled doctors by surviving 36 life-threatening surgeries and learning to speak.
Doctors discovered he was the only person in the world to be born with his collection of ailments, and so his condition has been named after him – as Grayson’s Syndrome.
Mum-of-four, Jenny, 39, from Ranburne, Alabama, USA, 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.
‘He is so special to us and is our little miracle. He is a blessing.
‘He is the candle that never goes out no matter how hard you blow.’
Grayson was born on 15 February 2013 following a healthy pregnancy.
His parents, who have three other children, Jaycee, 16, Alex, 12, and Slate, three, 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.
Jenny 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.’
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 get 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.
To date he has had 36 surgeries – including 26 on his brain or skull.
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,’ said Jenny.
Jenny and Kendyl said every surgery, hospital trip and hour of care provided to Grayson has been ‘worth it’ if it means they get to spend as long as possible together.
She said: ‘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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