Leona O'Neill: Government must act now to protect Billy Caldwell's right to life

Charlotte Caldwell's fight to keep her seriously ill 12-year-old son alive is deeply inspiring, but it is disgraceful that she and Billy have been forced to endure so much by state bureaucracy and inaction on the part of legislators, writes Leona O'Neill

Charlotte Caldwell (49) and her son Billy (12), who suffers from a rare form of epilepsy, which can be treated with cannabis oil Picture: Alan Lewis

THERE is no force on Earth that could stop a mother determined to protect her child from harm. And for Co Tyrone mother Charlotte Caldwell this theory has been tested time and time again.

For the Castlederg mum has been all over the news these past few days after having her epileptic son Billy’s cannabis oil – which has been keeping his life-threatening seizures at bay for nearly a year – was confiscated when she returned from Canada last Monday with a supply.

After a press conference at Heathrow, Charlotte was invited to meet the UK minister of state Nick Hurd, who told her that Billy could not have his medication back, despite his mum’s desperate pleas.

In the past week Billy’s terrifying seizures have returned. Now the exhausted, heartbroken but determined mum, who has been pushed to the limits of human endurance many times, has won another small victory to get Billy’s medicine off a desk in the Home Office and over to the hospital. But, once again, it took Billy to be teetering on the edge of life for any movement to happen.

When he was just six months old, doctors sent Billy – who suffers from a rare, life-threatening form of epilepsy – home to die. Refusing to accept this dire diagnosis, Charlotte embarked or a remarkable journey across the world to seek help to keep him alive, raised over £100,000, found herself homeless, faced down the government and the authorities and captured the hearts of Northern Ireland and now the world in the process.

I have known Charlotte for years, through my work as a journalist, and she has often said she would do it all again in a heartbeat for her Billy.

Charlotte and Billy's incredible story began in 2015. At just 14 weeks old Billy began to suffer seizures. At his worst, he would have 100 seizures in one day. The Castlederg mother says it got so bad that doctors told her to take him home to die. But, refusing to give up on her son, 49-year-old Charlotte instead took to the internet to research innovative medical procedures and took him to Chicago to get him treatment that was unavailable in Northern Ireland.

Billy, who is now 12 years old, was treated successfully and stayed well for several years. But two years ago his catastrophic seizures returned and his mum found herself having to travel back to the US to have him treated there, this time in LA, raising £130,000 in the KeepBillyAlive campaign to pay for medical bills.

Her journey has not been easy. She has challenged the might of the Northern Ireland government, perpetually putting pressure on the Health Department to help her and her son. She has travelled thousands of miles to the other side of the world to get him innovative treatments he needs to stay alive.

As mounting medical bills threatened to crush her in the US, Charlotte faced the brutal reality of having to sleep in a tent just so she could meet hospital costs. When Billy was successfully treated with cannabis oil she faced jail when she returned home to Castlederg from America with his medication. But Charlotte was not fazed by the prospect of jail, or a criminal record, only with keeping her precious son with her.

Last March they walked 150 miles from Castlederg to the Royal Victoria Hospital to highlight the issue. For many of the miles, Charlotte carried her son on her back.

Shortly afterwards a GP in Castlederg wrote a prescription for the Cannabis oil, making him the first child to be prescribed the substance on the NHS.

But after almost a year without a seizure, the Home Office ordered the doctor to stop the prescription, sending Charlotte to Canada for treatment to save her son, and his medicine was seized when she declared it at customs in London.

Charlotte faced a harsh reality last week when Billy’s condition deteriorated critically because he didn’t get the medication he so desperately depends on. With pressure mounting, compassion won in the end and tragedy was thankfully averted – until the next battle.

The entire case has shone a light on medical cannabis reform in the UK and the painstakingly slow progress being made on the issue.

Billy and his mum have not got the luxury of time. They need those in power to act now, change legislation and allow this little boy the right to life.

Whatever happens, knowing Charlotte, she will never give up fighting for her boy. She often told me that it’s what any mummy would do. And there was never a truer word spoken. She has shown the world the power of mum.

Follow Charlotte and Billy's Journey on the KeepBillyAlive page on Facebook.

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