Billy Could Die in Front of My Eyes. Help Save Him; Mum's Plea over PS300k Epilepsy Treatment in US

The Mirror (London, England), September 30, 2016 | Go to article overview

Billy Could Die in Front of My Eyes. Help Save Him; Mum's Plea over PS300k Epilepsy Treatment in US


Byline: JILLY BEATTIE

LITTLE Billy Caldwell is in America with his mum Charlotte and life should be wonderful.

But it's far from wonderful. It's terrifying, terrible and testing every bit of their love, strength and faith.

Because at just 11 years old Billy could die at any moment and his mother is battling to prevent his next breath being his last.

She rests on the bed bedside him every time he sleeps, her arm around his shoulders, her eyes flickering as she desperately tries to stay awake so she can help him if he slips into a seizure.

And today Charlotte is asking for help for her boy as he awaits test results at the Los Angeles Children's Hospital.

The prospect of surgery, which is intended to prevent Billy's dangerous seizures recurring, is daunting.

But the prospect of not having the surgery is much worse despite the PS300,000 bill it will involve.

Charlotte, 49, from Castlederg, Co Tyrone, said: "When Billy was two years old he was sent home to die from the Royal Hospital for Sick Children in Belfast. I just couldn't accept that and I researched places all over the world to try to get him help.

"We travelled to Chicago and Billy had brain surgery, which not only saved his life but allowed him to lead the life of any other little boy, enjoying the beach, horse riding and the love of his family.

"Dr Douglas Nordli operated on Billy and literally gave me back my boy and nine years on we've had to return to his care to see if he can operate again."

Billy suffers from intractable and status epilepsy which means the seizures cannot be controlled by medication or diet and when they occur he needs help to come out of them.

Billy live nerves MUM yesterday During every episode his mother has to give him a relaxant and oxygen as she prays he comes round and recovers without suffering brain damage.

Charlotte said: "Any one of these seizures could kill him so I live on my nerves, watching him all the time whether he is awake or asleep. His seizures are silent and can last for a long time, so while he sleeps, I lie beside him and hope he has a peaceful sleep."

For nine years Billy's seizures have been controlled by the first surgery but as he has grown so the need for a further operation has developed.

But without hope of the care he needs being delivered in Northern Ireland, Charlotte knew the one hope was in LA.

She said: "There is a sort of hierarchy of childhood illnesses at home and epilepsy is not really seen as a serious condition and that has a knock-on effect and means we've had to come to America for a chance to save Billy.

"We would much rather be at home in Castlederg with our friends and family, we'd much rather Billy was in school with his pals and having fun at the weekends.

"But he could die in front of my eyes unless he gets the surgery he needs and in order to get that surgery he needs to be in Los Angeles with the doctor who knows him. …

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