Little Robbie Ovenstone is a walking miracle - after doctors re-wired his brain to help him walk.
For months Robbie, six had been unable to walk, feed or dress himself due to a terrible muscular disease that caused his body to twist.
He had a normal birth, and for the first three years of his life he ran around and played like other children his age.
But after being diagnosed with dystonia, a muscular disorder which causes abnormal movements and posture, his body started to twist. His feet started to twist inwards and his right arm kept jerking above his head.
But now after an amazing operation where doctors inserted electrodes into his brain to re-wire it and correct the messages being sent to his muscles, his body has now untwisted itself and he can start to walk normally again. Power comes from a battery pack inserted between his skin and rib cage as part of the six hour operation.
His delighted father Doug, 46, a former operations manager who gave up his job to care for Robbie, says: "It really is amazing to see. He is now standing again on his own feet and taking his first few steps.
It has only been a couple of weeks since the operation, but already he is doing remarkably well.
The family's nightmare began after Christmas 2008, when they noticed Robbie kept lifting his right arm up behind his head.
Doug, who lives with wife Jane, 37, and their other children Rhys, 15, and Chloe, four, in Fife, says: "We couldn't understand why Robbie was doing it. We asked him why and he said that he didn't know either, his arm just kept moving upwards in a strange position. Up until then he had been a perfectly normal little boy and loved running around with his friends. He had so much energy."
The couple took Robbie to see the GP and he was referred to hospital for scans, as doctors thought he was suffering from some form of epilepsy.
Then his right foot started to twist inwards when he walked, causing him to fall over.
"It was really frustrating as Robbie was getting worse as the weeks went by," explains Doug. "He kept falling over and soon he couldn't walk at all as his foot was twisted inwards so much. His arm also kept going up behind his head too involuntarily like his muscles were in spasm.'
Robbie was referred to the Sick Children's Hospital in Edinburgh in September 2009 and within a few weeks he was diagnosed with dystonia. It is thought to be caused by a malfunction of the central nervous system and usually begins at some stage in childhood.
"Robbie's muscles were pulling him in different directions in different positions, which was causing the twisting," says Doug.
We were shocked when he was diagnosed, but relieved that we finally had some answers as to what was wrong with him.
'Robbie had to use a wheelchair to get around, and he could no longer feed or dress himself. It was devastating to see him go downhill so fast. The doctors looked at the possibility of using botox to try and relax his muscles, but so many muscles were affected that it would have been impossible."
The doctors suggested that Robbie underwent an operation called Deep Brain Stimulation, where two electrical wires are passed down through the top of the skull and into the part of the brain which sends messages to muscles.
Another wire would then run from the stimulators into a battery pack placed under the skin of the abdomen. The operation can be risky, causing haemorrhaging or brain damage, but it was Robbie's only chance to walk again.
"We knew that the operation was risky, but we knew that it was his only chance," says Doug.
Robbie had the six hour operation at the Evelina Children's Hospital last month, and it was a success.
"It was so nerve-wracking when he was wheeled down to the operating theatre as we knew how risky it was," says Doug. "But straight after the operation he opened his eyes and gave us this huge smile, which was amazing."
Robbie made such a quick recovery that he was only in hospital for seven days and is already coming on in leaps and bounds.
"From the first day after the operation his foot had immediately corrected itself and it was no longer twisted inwards," explains Doug.
He is now learning to walk again, which is fantastic to see. He can write again, and feed himself too. All his muscles are now learning to use themselves correctly again. The operation has really changed his life. It's remarkable. We are so proud of him.
"When he was twisted and in a wheelchair we never thought we'd see the day when our son walked again. It's a real miracle."
What an amazing story.
Good luck Robbie!
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