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'Another seizure could mean the end of my son's life... please, help me keep him alive'

Desperate mum asks public to help fund the treatment that could help son win battle against deadly epilepsy

By Lisa Smyth

Published 07/07/2016

Charlotte Caldwell and her son Billy at their home in Castlederg
Charlotte Caldwell and her son Billy at their home in Castlederg
Charlotte Caldwell and her son Billy at their home in Castlederg
Charlotte Caldwell and her son Billy at their home in Castlederg
Billy getting EEG attached at Children's Memorial Hospital, Chicago
Some treasured photos of Billy Caldwell with his mum
Some treasured photos of Billy Caldwell with his mum

The mother of a little boy who doctors sent home to die when he was just six months old says she once again needs the public's help to save her darling son's life.

Charlotte Caldwell wants to take Billy (10) - who suffers from a severe form of life-threatening epilepsy - to the US for treatment unavailable here.

She is planning to return to the same hospital in Chicago where her son was treated after doctors in Belfast sent him home to die when he was a baby.

Fighting back tears, the 48-year-old from Castlederg says: "It's an awful scary situation we have found ourselves in.

"Billy was doing so well. His condition was under control, but the seizures started up again about three weeks ago.

"He had two the first week, four the next week and we've had six already this week, and I'm very scared.

"Any one of the seizures could kill him, so he needs a proper review as soon as possible, but I'm terrified that he won't get that in time.

"Billy has battled epilepsy and won before, and I would like to say that if he is prepared to keep going and keep fighting, I have to stand behind him.

"I'm asking the public to get behind him to support him and help him. Please just keep him alive, that's what I'm saying.

"Please support him and don't let him die, because that's what's going to happen.

"Every penny counts, it doesn't matter how small, because if everyone comes together as a community to donate, then it would all add up."

The sudden deterioration in Billy's health is the latest devastating blow for Charlotte, who has dedicated her life to caring for the youngster and who has even sold her home to help pay for his treatment.

He began suffer seizures when he was just 14 weeks old, and at his worst he experienced more than 100 of them in a day.

"I was never allowed in the room with him in A&E as the doctors fought to bring him back," Charlotte says.

"I would just be sitting there for four, five, maybe six hours while they worked on him. The doctors would be coming out and telling me they didn't know whether he would survive.

"It got so bad that they told me to take him home to die, but I just couldn't accept it, so I started doing research and my house ended up looking like a library on epilepsy."

Ms Caldwell found a doctor in Chicago who was willing to treat Billy, but the health service here refused to fund the treatment because it was in America.

Determined to fight for him, the family launched a fundraising drive and Charlotte and Billy moved to the US for two years, during which period he underwent intensive treatment. "When we arrived there, Billy couldn't hold up his head, he was having up to 100 seizures a day and any one of them could have killed him," Charlotte explains.

"His brain was so badly damaged by the cocktail of drugs that he had been on and the seizures he had been having, but the doctor over there did a load of tests and told me that he thought he could help."

Thousands of miles away from home and completely isolated from family and friends, Charlotte cared for Billy 24 hours a day. At the same time, she continued to campaign for the Department of Health to fund his treatment.

"I was so lonely there, Charlotte admits. "I didn't know anyone at all, and the only adult conversations I had were with the doctors, the nurses and the physiotherapists.

"I had some really dark times when I was out there. I have to say the worst time was during the winter, because the season was really harsh there.

"The snow was so deep that I had to dig us out of the house just so I could get Billy to his appointments.

"However, it was all worth it in the end because of how well Billy did and also just the fact that he was alive."

Eventually, the Health Minister at the time, Michael McGimpsey, agreed to fund Billy's treatment if the care was delivered in the UK or Europe.

Charlotte managed to find a consultant at the John Radcliffe Hospital in Oxford who had the expertise to treat her son.

The hospital was also able to provide the physiotherapy that proved so important in aiding his recovery.

However, after the mother and son returned to the UK, Mr McGimpsey said that he had never in fact agreed to fund Billy's treatment.

"We had been in Oxford for a while by this stage," Charlotte says. "I couldn't tell my family because they had already been through so much. They worried so much about me, especially when I was over in America by myself.

"So Billy and I got a flight over to Northern Ireland and I went to the bank and borrowed £25,000. We went back to Oxford and I gave it to the hospital."

After a dedicated campaign spearheaded by the likes of Martin McGuinness, Pat Doherty, Barry McElduff and Iris Robinson, Mr McGimpsey finally bowed to pressure to pay for Billy's treatment.

The little boy's condition then improved so much that he and Charlotte were finally able to return to Northern Ireland.

But their lives were turned upside-down again just a matter of weeks ago when the terrible seizures returned.

Charlotte has been told Billy must wait at least two months for an appointment at the John Radcliffe Hospital.

And she also been warned that they cannot carry out the tests she believes are required to properly assess Billy.

"I never thought we would be back in this position," the devastated mother says. "It has only been a few weeks, but I can already see the regression. I can see his right eye is turning in, and that's the damage that's being done to his brain.

"This time around, Billy is a bit older and there is even the chance he could have surgery that might stop the seizures altogether.

"I truly believe that if Billy is left and not given a proper review, and if he doesn't get it quickly and a treatment plan isn't put in place, then these seizures will take his wee life.

"I can't allow that to happen. As his mum, if I were to sit back and let that happen, I would be failing my child."

  • To make a donation to help pay for Billy's treatment, simply log on to the Keep Billy Alive 2 Facebook or Just Giving pages. And yo find out more about how you can support the campaign, email keepbillyalive2@yahoo.com or ring 07540 356 389; 07968 508 250; 07749 315 345 or 07899 910 358

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