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Desperate Tyrone mum releases clip of son's seizure in cash drive for vital treatment

'It was hard to film Billy's seizure, but I want people to see what it's really like'

By Lisa Smyth

Published 28/07/2016

Billy Caldwell with his mother Charlotte
Billy Caldwell with his mother Charlotte
Billy at Children’s Memorial Hospital, Chicago

A Co Tyrone mum has released a heartbreaking video of her 10-year-old son suffering a seizure in a bid to save his life.

Charlotte Caldwell took the difficult decision to film Billy in an attempt to raise enough money to pay for potentially life- saving treatment for the youngster.

The mother, from Castlederg, hopes the harrowing footage will reveal the reality of living with severe epilepsy and encourage people to donate to her cause.

Billy has intractable epilepsy and is status epileptic, meaning he could die at any time as a result of his seizures.

Charlotte (48) said: "I love him and I'm just trying to save him."

Billy began to suffer seizures when he was just 14 weeks old. At his worst, he had more than 100 every day.

He was just a baby when doctors in Belfast told Charlotte there was nothing more they could do to help and said to take him home to die.

However, she refused to accept the prognosis and instead launched a fundraising campaign to take him to America for specialist treatment.

Mother and son spent two years in Chicago, and Billy made an incredible recovery before returning to the UK, where he underwent more intensive therapy at a hospital in Oxford for a further two years.

After four years away from friends and family, Charlotte and her son returned to Northern Ireland and continued with their lives.

However, just over a month ago, Billy's condition took a turn for the worse, leaving him suffering a growing number of potentially deadly seizures.

Charlotte said: "From my perspective, every time he has a seizure I wonder if he is going to come out of it or if it will be the seizure that kills him.

"I'm upset because I never anticipated that we would be back in the same situation where I am doing everything I can to keep him alive and to stop him from becoming disabled.

"He won last time and beat his seizures, and it's like round two for him.

"I'm upset because the services still aren't here in Northern Ireland to help him.

"I suppose I took it for granted that while his seizures were controlled that if he got ill again the help would be there, but that isn't the case.

"When he has a seizure now, I'm holding my breath to see whether he comes out of it."

Charlotte also revealed that as well as increasing in number, the seizures were additionally growing in duration.

Just a few nights ago, her son suffered the worst attack he has experienced in years, and Charlotte was moments away from ringing 999.

"He sleeps in bed with me because they could happen at any time, and I don't think I ever drop into a deep sleep because I'm always on edge," the anxious mum explained.

"I will drift off and then panic and jump up and touch him to make sure he's still alive. I'm terrified he's going to die and I don't even realise."

Charlotte is trying to raise £300,000 to take Billy back to the same hospital in Chicago where he received treatment after doctors in Belfast sent him home to die when he was a baby.

"It was a hard decision to film one of Billy's seizures, but I want people to see what it is really like," she said.

"Billy has a good quality of life. Despite everything, he can still walk and he enjoys things like horse-riding, but I can already see him getting worse with the seizures. Any one of them could kill him and I am just terrified that I'm going to lose him." To make a donation to help pay for Billy's treatment, visit the Keep Billy Alive 2 Facebook or Just Giving pages.

To find more about how to support the campaign, email or ring 07540 356 389; 07968 508 250; 07749 315 345 or 07899 910 358

Belfast Telegraph

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