By Sian Lower
BRAVE “bionic boy” Robbie Ovenstone has been able to open his advent calendar for the first time this year – after surgeons planted electrodes in his brain.
The Scots six-year-old suffers from a painful brain condition that causes muscle spasms and spends most of his time in a wheelchair.
But the pioneering surgery, carried out inLondon, is already beginning to reverse the effects of the disease and Robbie is looking forward to the best Christmas of his young life.
His father, Dougie, from Kirkcaldy, Fife, said: “He is now opening up his own advent calendar which he wasn’t able to without help before and his joining in with his brother and sister when they are playing whereas before he used to watch them.”
Robbie suffers from child onset dystonia, which muddles electronic signals from the brain, causing Robbie’s arm and leg muscles to twist inwards.
He needs help with tasks most six-year-olds take for granted, such as feeding and dressing themselves.
But Robbie’s life has already been transformed by the surgery carried out at King’s College Hospital, London.
The six-hour operation involved implanting two electrodes right into the centre of his brain with wires leading out of his skull to a battery that needs to be recharged for 15 minutes every day.
Dougie, 46, and his wife, Jane, 37, thought long and hard before agreeing to let their son undergo the tricky operation, developed in the last five years.
Despite the inherent risks of brain surgery, Dougie said the family made the difficult decision to go ahead with the operation.
He said: “He was getting worse and worse, he was using his wheelchair 100% of the time.
He continued: “I know London is a long way away, but we would have gone to the ends to the earth if it meant improving his quality of life.”
Robbie was kept on morphine for pain relief for the first day but bounced back with amazing speed.
The operation inserted implants into the basal ganglia of Robbie’s brain, the part which controls muscle movements.
They send out small electrical pulses which correct the effects of distonia, which Robbie first began showing signs of when he was four.
Dougie said: “The next day he was sitting up in the bed playing games.
“As soon as he came round from the operation they switched on the system and on the second day when he was filling in one of his charts to say what he had eaten and drank we noticed he was using both hands which he hadn’t done for a long time.”
Now Robbie’s family say that despite the strangeness of having a mechanical implant, the child is going through a “miraculous” recovery.
Dougie, a full-time carer for Robbie and former telecoms worker, said: “It’s a miracle for us really.
“It’s a bionic implant. People joke about him being the bionic man, but it just goes over his head!”
“We get some strange looks when we say we’ve got to go and charge Robbie, but people are great about it.”
Robbie will have the implant for the rest of his life, but his dad said it was far better than the ‘never ending cycle’ of medication he had to go through.
He said Robbie had gone through an ‘amazing change’ since the operation, and was now able to walk on his own around the house.
He is out of his wheelchair, but still struggles to walk long distances.
He continued: “He got switched on when he first had the operation.
“The improvements weren’t instant. But now he can develop muscles he’s not used for years.
“His right leg is much straighter than it was and he has a lot more use of his arms than he did before.”
He said Robbie had many friends at school, St Marie’s RC Primary in Fife, and was not suffering any teasing about his condition.
He said: “The school is really supportive, he’s in primary two now. The kids seem to accept him, he’s got a lot of friends.
“I’m hoping he can have a normal childhood now he’s had this operation. We’ve been thinking about getting him swimming lessons.”
He said Robbie’s sister Chloe, 4, and brother Rhys, 15, were delighted they could play with their brother again.
Robbie is a keen East Fife fan, though is also over the moon about the iPad his parents bought for him when they travelled toLondon.
Now that he can use his hands fully, this Christmas the six-year-old will now be able to enjoy toys other kids take for granted.
Though his parents want to keep his presents a closely guarded secret.
Dougie said: “We have been told it will be 12 months before the full benefits take place and we are back down inLondonregularly for checkups and to get the electrode settings adjusted.”
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