Brave mum reveals why she decided to ‘make my son disabled to save his life’
A mum has told she “made her son disabled” to save his life – by allowing surgeons to disconnect half his brain.
Kyan Blake, 8, suffered up to 100 exhausting seizures a day after he had a stroke.
Doctors eventually said the only possible cure was a risky operation to disconnect half his brain, leaving him blind in one eye, unable to walk and unable to fully speak.
But despite a chance the op wouldn’t even work, his brave parents Sonya Guest, 27, and Robert Blake, 34, gave consent.
Three months on, seizure-free Kyan is learning to walk and talk again.
He is now partially sighted and relies on his wheelchair.
But his proud mum and dad say they are delighted to finally have their cheery son back – and don’t regret their decision for a moment.
Sonya, a shop manager from Tividale, West Mids,. said: “I made my son disabled to save his life.
“It was the hardest decision, but I don’t regret it.
“It was all or nothing.”
Kyan had a stroke aged two, which doctors later said was most likely caused by an earlier bout of chicken pox which had lingered in his system.
It took three weeks for doctors to get the hour-long seizures under control with medication, but the brain injury left him unable to eat, walk or talk.
Brave Kyan relearned to walk and talk, and was seizure and medication free for nearly two-and-a-half years when the attacks suddenly returned.
He was suffering up to 100 a day despite trying 11 different medications, leaving him unable to go anywhere on his own.
She said: “He would drop to the floor really violently, and he couldn’t even go to the toilet on his own, let alone have a bath. We we’re scared all the time.”
Doctors eventually told the family the only treatment option left was a hemispherectomy.
The very rare neurosurgical procedure involves the cerebral hemisphere – one half of the brain – being removed or disconnected.
Kyan had the 11 hour op to disconnect the left half of his brain at Birmingham Childrens’ Hospital in January this year.
After eight weeks in hospital he was discharged and is taking part in a three-month intensive residential rehab programme, 150 miles from home.
His speech is returning and he can hold conversations despite struggling to find some words.
It is expected he will eventually be able to take steps on his own, relying on his wheelchair only for longer journeys.
“Everything is so unknown but even if he doesn’t walk again it is so much better than he was,” said Sonya.
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