Meet Aidan. He’s four years old and suffers from a condition so rare he’s only one of 130 known to have it. And it’s incurable.
But he will still put a smile on your face.
He can’t speak, will never walk and needs constant around the clock care, but he loves to laugh, loves cuddles, and loves to smile.
He has severe mental and physical abnormalities – after birth he started to develop large unexplained growths and doctors had no idea what was wrong. One is developing in his brain and has left him with epilepsy.
‘The older he gets the more lumps and bumps seem to appear,’ his dad Karl told Channel 5’s Aidan: The Rarest Boy In The World.
‘When we first got told Aidan’s brain was different that was the worst day,’ Aidan’s mum Vicky revealed. ‘I thought things couldn’t get any worse, I came out of the hospital, got in the car and broke down. I told my family “I just can’t do it”.’
At the age of four,Aidan was still like a baby. He couldn’t sit, couldn’t play with toys, couldn’t say mum and dad.
And despite seeing 18 specialists, not one could explain what was wrong.
His parentshad had no inkling anything was wrong before Aidan was born.
‘They noticed there were little things wrong with him,’ Karl revealed. ‘His face, his foot. You could see there was something wrong with his face but the way he was lying it didn’t look any different.’
But for his mum Vicky it was difficult that people would notice Aidan’s deformities.
‘When we first got him home it was difficult to go out because people would stare.We tried to get on with life as normal as we could, but even just going shopping we had peoplecoming up to us saying “what’s wrong with his face? Will they be able to fix him?”
Initially doctors thought Aidan was suffering from Proteus Syndrome – more commonly associated with what the ‘elephant man’ suffered from. But soon they realised that that wasn’t the case and they were back to the drawing board.
Doctors were reluctant to operate to remove the growths while Aidan was so young. But the growths were sapping the nutrients from his muscles and they were beginning to interfere with his breathing.
‘You stand outside his bedroom in the morning and take a deep breath as you go in because you don’t know if he’ll wake up at all,’ said Karl. ‘The weight of the growth on the side of his neck is affecting his normal everyday things.’
But finally, a doctor at Great Ormond Street hospital decided an operation to Aidan’s face should go ahead, although there was a high risk of damaging facial nerves and leaving Aidan unable to blink.
His mum Vicky was particularly afraid.
‘What if he starts to bleed and they can’t stop it, what if he gets an infection? I’m just trying to think we are doing this for Aiden to give him a better quality of life, so I’m just praying these lumps don’t grow back. I don’t want it to have been for nothing.’
Three and a half hours into the surgery the surgeon managed to isolate the nerves so that he could remove the growth. After five hours he’d removed a third of a kilo.
Shortly after the surgery, Aidan’s parents got the devastating news of his diagnosis.
He suffers from a rare genetic mutation called Cloves Syndrome. It was first discovered in 2006 and only 130 people have been diagnosed with it world wide. He is a one in 50 million little boy.
Cloves syndrome patients have a higher risk of blood clots and cancer of the kidney.And there is no known cure.
After desperately searching for answers, this was terrible news for his parents. Vicky said: ‘We wanted a diagnosis where we could give him this to cure him, but nowthe future is more uncertain for Aiden because there’s so little known about cloves syndrome.’
Aidan is on the severe end of the spectrum, although he’s not at risk of a shorter life expectancy.
But happily, at the age of five, Aidan has just started school. And he loves it.
‘He’s a popular little boy, everyone asks about Aiden, everyone loves Aiden,’ his dad said.
He attends a special needs school, and even better news is that Aidan may not need any more surgery.
Doctors at Cambridge University have been undertaking a pioneering study on a drug called sirolimus which they home will prevent the growths from forming.
Aidan takes part in the trial from July for six months and his parents will know by the end of the year if it’s working, and he can hopefully start to enjoy a life free of his deformities.
‘He’s not a baby anymore,’ said his dad Karl. ‘He’s becoming a little boy.’
Aidan: The Rarest Boy In The World is on Channel 5 Tuesday March 24 at 9pm
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