by Louise Doyle
A MOTHER whose son is battling a life-threatening form of epilepsy – for the second time – has made an emotional appeal to the people of Donegal for help.
In August, a heartbroken Charlotte Caldwell made an appeal in this newspaper calling on people across the county to support a campaign, ‘Keep Billy Alive 2’, which she has set up in her son’s name is a bid to save his life.
First diagnosed with Intractable Status Epilepticus shortly after birth, 11-year-old Billy, from Castlederg in County Tyrone, was sent home from the Royal Victoria Hospital in Belfast in 2006 to die after doctors didn’t believe the young boy – who had been suffering up to 30 seizures a day – could be cured.
However, refusing to give up on her son – and on the back of a major public campaign in the North raising £250,000 – the youngster travelled to Chicago in 2007 to undergo pioneering treatment providing him with a diagnosis and a care plan with the help of expert epitologist, Dr Nordli.
Defying all the medical odds, young Billy survived. In fact, he not only survived, he had, for the first time, an opportunity to enjoy his life through learning to walk, relishing attending school and even taking up horse riding lessons.
However, in a cruel twist, Billy’s deadly seizures returned in the summer.
When Billy takes a seizure, Charlotte has to administer 12.5mg diazepam PR and put oxygen on him as he goes blue. One seizure can take his life or leave him disabled.
Desperate to save her son’s life, Charlotte said she made the decision to take her son to the states once again in a fresh attempt to get to the core of the life-threatening seizures.
The devoted mum set up ‘Keep Billy Alive 2’ campaign to raise the £300,000 needed for lifesaving treatment in the States.
Speaking to the Donegal News this week, an emotional Charlotte told of how her son is undergoing intensive tests at Children’s Hospital Los Angeles, and is still suffering four major seizures every week on top of 20 smaller episodes.
“Billy underwent a 3T Telser scan on Friday. It was a very intense scan of his brain which took two hours. At the minute he is undergoing intensive tests.
“Dr Nordli, who treated Billy the first time around in Chicago, believes he could be a candidate for surgery, which would mean no more seizures, however because the operation is brain surgery, everything is being done with caution.
“At the minute Billy is going through intense epilepsy surgical evaluation. Dr Nordli believes the seizures are coming from the front lobe of Billy’s brain and he wants to be sure that all the tests marry up. He thinks the legion on the front left lobe was left there from when he was a baby and was sent home to die and that is what has caused the return of his seizures.”
Living in a rented home 25 miles from the hospital, devoted Charlotte drives her son Billy to hospital every day for the crucial tests.
“Billy is undergoing genomic tests which are much more technically advanced than genetic testing. All the results of his genetic tests came back clear. They revealed no syndromes, so now he is having genomic tests to look further in to the core of the problem.”
Knowing the cost of medical tests and potential life-saving brain surgery, Charlotte put a target of £300,000 on ‘Keep Billy Alive 2’ campaign. Since the campaign was set up a number of months ago it has raised around £25,000.
Charlotte said she fears the closure of hospital doors and having to return home with her son if essential funds are not raised.
“The medical bills are mounting up and I am just so afraid there won’t be the funds for Billy’s treatment and we will have to come home. This could be Billy’s last chance and I don’t want to give up the fight, but it’s very difficult on my own.
“People have been very good, and caring and supportive. Fundraisers have been set up all over the country and people have also been donating online. I want them to know that their support is very much appreciated, from Billy and from myself.
“We have only scratched the surface, however, in terms of how much we need in funding. I am calling on as many people as possible to please, please get behind me and help me save my son’s life.
“It’s very isolating and lonely here. It’s just Billy and myself and Billy really misses his brother, Kyle, who travelled out with us but then had to return home.
“Please help me keep Billy alive.”
If anyone would like to organise an event to raise much-needed funds for Billy, please get in touch with ‘Team Billy’ by calling (0044) 07540356389, (0044) (0) 7968508250, (0044) (0) 7749315345, or (0044) (0) 7899910358. Alternatively, e-mail Keepbillyalive2@yahoo.com, see Facebook/Keep Billy Alive 2 or Justgiving/Keep Billy Alive.
Donations can also be made via www.just4children.org, charity number 1164473.
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