WOW Charlotte Caldwell

In my job, I meet some truly incredible people – it’s one of the things I love most about the work that I do.

Charlotte Caldwell is one of these people – she never ceases to amaze me with her resilience and determination as the parent of a child with a life-threatening medical condition.

I first spoke to her three years ago after a mutual contact passed her my telephone number.

Not for the first time, Charlotte had found herself in a gut-wrenching fight for her son’s life and she wanted my help to publicise her campaign.

I was in awe of her courage then, I am still in awe of her today.

For those of you who don’t know, Charlotte is mum to 13-year-old Billy, who was diagnosed with a rare and severe form of epilepsy when he was just a baby.

Doctors in Northern Ireland struggled to bring the condition under control, even recommending that Charlotte take Billy home to die.

Not for one second, however, did she heed their advice.

In the years that have followed, Billy has repeatedly proved doctors wrong – most recently making his way down a set of stairs all by himself, a moment captured on video by an obviously delighted Charlotte.

“This is a child who is not even supposed to be alive,” she said.

“They said he would never walk and look at him now, seeing how far he has come fills my heart with joy.”

But none of this has happened by chance.

Keep Billy Alive

Quite simply, it’s down to Charlotte, who even spent a period living rough in Los Angeles just to try and get Billy the healthcare he needs to stay alive.

Her nightmare began when Billy was just 14-weeks-old and he started having seizures, at his worst suffering more than 100 seizures a day.

With doctors in Northern Ireland unable to help him, Charlotte was forced to look further afield and she eventually found a doctor in the US able and willing to accept Billy as a patient – but the health service in Northern Ireland refused to fund the treatment because it was in America.

As a result, the family launched a fundraising drive and Charlotte and Billy moved to the US for two years where he underwent an intensive treatment programme.

Charlotte continued: “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.

“His brain was so badly damaged by the cocktail of drugs he had been on and the seizures he had been having, but the doctor there did a load of tests and told me 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, I didn’t know anyone and the only adult conversation I had was with the doctors, nurses and physiotherapists,” she said.

“I had some really dark times and I have to say the worst time was during the winter because they’re very harsh.

“The snow was so deep that I had to dig us out of the house just so I could get Billy to his appointments, but it was all worth it because of how well he did and the fact that he was alive.”

Charlotte and Billy couldn’t stay in America indefinitely and after two years they returned to the UK, first to Oxford and finally back home to Castledawson when the health service agreed to fund Billy’s treatment in Northern Ireland.

And so, Charlotte was finally able to start building a life for her and Billy at home.

But it all came crashing down when Billy was 10-years-old as his seizures returned with a vengeance, and this was when I first received a desperate call from Charlotte as she needed £300,000 to take Billy back to America for more treatment.

It seemed an impossibly high target, but knowing Charlotte as I do now, she was never not going to get Billy the treatment he needed.

I remember her telling me how she went to bed every night beside Billy, so she would be close by if he suffered a seizure, but how each night was spent terrified he would pass away beside her.

Horrific doesn’t even come close to describing what she was going through.

They eventually returned to the US and, while out there, Charlotte continued her fundraising drive, not knowing from week to week whether she would be able to pay the eye-watering medical bills.

Things became so tough that she couldn’t afford her rent and she and Billy found themselves sleeping in a tent on the streets of Los Angeles.

It was a nightmare situation and one where many people may understandably have felt they had no choice but to come home – but still Charlotte carried on.

At one stage she contacted me and told me she had to decide whether to allow surgeons to operate on Billy’s brain and potentially leave him permanently disabled, or risk him suffering a seizure that would claim his life.

How does any parent make that choice? It was utterly heart-breaking.

However, doctors began to treat Billy with medicinal cannabis and miraculously the seizures began to subside.

As the days turned into weeks, this wonderful, brave little boy began to recover.

Once again, Charlotte knew she and Billy couldn’t stay in America indefinitely, but she couldn’t return to Northern Ireland knowing that Billy would no longer be able to get the medicinal cannabis that was essentially keeping him alive.

And so began her much-publicised campaign to have officials in the UK change the law that would allow doctors to prescribe medicinal cannabis to their patients.

Charlotte found a GP close to home willing to prescribe Billy’s medication, but the lifeline disappeared when the doctor was advised against continuing to treat the youngster with medicinal cannabis.

Keep Billy Alive

And still Charlotte refused to give up.

“He is my son, Billy can’t talk so I have to be his voice and if I stop speaking for him and fighting for him, he will die,” she said.

Her fight saw her travel to Canada with Billy to get his medication and finally she was successful in her fight for a change in the law.

It came after Billy’s medication was seized by officials Billy and Charlotte arrived in Heathrow from Canada and he was rushed by ambulance to hospital after he became dangerously unwell.

Late on June 16 last year, Charlotte texted me to tell me Government officials had told her they would return Billy’s medication.

It was the breakthrough she had been working so desperately for – finally she could see a future for Billy at home in Northern Ireland.

The law was even changed so that patients can be prescribed medicinal cannabis through specialist doctors if it is deemed they have an unmet clinical need.

Devastatingly, however, Charlotte is now facing a fresh crisis and Billy’s future is uncertain.

His seizures began to return towards the end of last year and Charlotte had to take Billy back to Canada for specialist treatment.

Doctors there realised that, due to the fact that Billy was going through puberty, the medication was no longer effective and he was provided with a different type of medicinal cannabis.

Charlotte is still waiting to find out whether NHS doctors here will prescribe the new medication.

It’s no way for anyone to live but Charlotte isn’t planning to give up.

As a parent, I always think that there is nothing I wouldn’t do to protect my child – thankfully the worst we have ever faced is the odd bout of sickness and a few playground rows.

I can’t begin to imagine how Charlotte has managed to cope all these years.

I know that the latest challenge is taking its toll, but to her, giving up simply isn’t a choice.

“I’m sick, sore and tired of having to fight all the time, but Billy’s my child, he’s my baby,” she said.

“I’ve watched him prove everyone wrong all his life and he’s not done proving people wrong yet.”

Leave a Reply

Your email address will not be published. Required fields are marked *