One mother’s long fight to save her young son’s life

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A mother will always go the extra mile for her child but for Castlederg woman Charlotte Caldwell the journey to save her son Billy, who suffers from a severe form of epilepsy, was much longer.

For 11 years Charlotte has battled to keep Billy alive, after doctors sent him home to die when he was just four months old.

And this week that journey came to an end when a clinician at the Royal Victoria Hospital in Belfast agreed to prescribe medical cannabis for Billy and take over his care from a doctor in Los Angeles.

With tears streaming down her face, an emotional Charlotte talked of the fight to find someone, anyone, who could save her beloved child, and her decision to take to the streets, walking from their home in Castlederg to the Royal Victoria Hospital in Belfast to campaign for the life-saving treatment that could give hope, not just to Billy, but to thousands of people in Northern Ireland.

“When Billy was four months old he spent 16 weeks in the Royal Victoria Hospital,” explained Charlotte.

“The clinician wanted to administer morphine and they told me he would go to sleep in my arms and die.

“As a mummy I couldn’t do that. I said I was taking him home and they gave him six months to live. They sent him home to die.”

But Charlotte was determined to save Billy and she began to research all the options and, when Billy was two, she found a doctor in Chicago who finally gave her hope.

“Billy was on five different epilepsy drugs but he was still having 100 seizures a day and nothing was working,” continued Charlotte. “I read research online and found Dr Nordlii in Chicago, who asked me to send him Billy’s medical records. Three weeks later he called to say he thought he could help.

“I couldn’t believe it was really happening, that someone could maybe save Billy.

“The cost was huge so we launched a fundraising campaign ‘Billy’s Ray of Hope’, and 10 weeks later I took Billy to the States,

“After a week of tests I asked Dr Nordlii if there was hope and he said ‘absolutely’. The relief was unbelievable.”

Dr Nordlii, who specialises in Intractable Epilepsy, began to wean Billy off most of his medication and put him on a special Ketogenic Diet to help to control the seizures.

“The withdrawals were horrific,” explained Charlotte. “He was shaking, vomiting, he couldn’t eat. It was horrendous. But once that had eased, he didn’t have a seizure for 16 weeks and I was in awe.”

The next step for the doctors was to improve Billy’s development. At the age of just two he couldn’t even hold his head up so they began intensive physiotherapy.

“He was completely disabled,” continued Charlotte. “He couldn’t hold his head up on his own, he couldn’t pick up a toy. He was just drooling from the side of his mouth in a buggy,

“He started four hours of physiotherapy a day, 20 hours a week. They taught him how to hold his head, how to sit, to crawl, to stand and to walk.

“We were in the States for two years and it was hard but I couldn’t believe Billy was still alive.

“When he sat up on his own for the first time I was crying, I could feel that he was going to walk and that kept me going.

“The thought of getting on a plane and Billy not being alive was too much to bare so I stuck it out.”

The family were rapidly running out of money and after the then Health Minister agreed to fund Billy’s treatment if they could find a doctor and physiotherapist in the UK, they made the decision to move to Oxford, rent a little house and continue the treatment in England.

However, just eight weeks later, the Belfast Health Trust wrote to Charlotte to say that they would no longer be able to fund Billy’s treatment in Oxford.

Charlotte was devastated but remained absolutely determined that she would not lose her child. “I flew back to Northern Ireland, borrowed £25,000 from the bank and continued on with the treatment,” she said.

After another 18 months of intensive treatment in Oxford, Billy came back home to Castlederg and he was able to walk.

“His seizures went into remission for eight years and he had a great wee life,

“He’s a real outdoors boy. We live in the country and we would be outside all the time.

“He went horseriding, he has his own pony. And we would go to the beach, even in the winter in our wellies.”

And then last summer, heartbreakingly, Billy’s seizures returned with a vengeance, Charlotte tried desperately to get a doctor in Northern Ireland to treat him, but much to her dismay, frustration and anger, she could find no-one to help.

Her only option was to go back to the American doctor who first gave her hope when Billy was a baby,

She tracked Dr Nordlii down to his new hospital in Los Angeles and he agreed to see him again.

“The only option I had left was to go to Los Anegles,” explained Charlotte. “Billy underwent intense investigations and they found a lesion on the left temporal lobe, which was causing the seizures.

“Dr Nordlii recommended medical cannabis to get the seizures under control and to try to shrink the lesions.

“If they had operated they would have had to take away the left temporal lobe and he wouldn’t have bene able to talk or walk. If they could shrink the lesions they could do a less invasive procedure.”
Charlotte couldn’t believe the difference the medical cannabis made to Billy, who has now been 54 days without a seizure. She began to try desperately to get the Royal Victoria Hospital in Belfast to work with Dr Nordlii and take over Billy’s care so that they could come back home to Northern Ireland.

Following emails and telephone calls to the chief executive of the Belfast Health and Social Care Trust, Charlotte was granted a meeting this week with a clinician at the Royal Victoria Hospital.

She knew that this was her one shot to get the medical cannabis Billy so desperately needed on prescription in Northern Ireland. And she had to make it count. Her son’s life depended on it.

So Charlotte decided that she would take to the streets, walking from her home in Castlederg to the Royal Victoria Hospital in Belfast to raise awareness of their campaign.

“I was frustrated but I was not going to allow them to let Billy die,” she said,

“I said that I would talk to everyone on the journey and tell people my story.”

That is exactly what she did. Hand in hand with Billy, as well as with other family and friends, Charlotte walked the back roads of Northern Ireland, meeting people and sharing their story along the way.

“I have plasters on my feet and I even carried Billy on my back for part of the way but the support from people we met was unbelievable,” continued Charlotte.

She admits that even she didn’t expect the outpouring of affection they received, words of encouragement which spurred them on to achieve their goal.

“The support has been phenomenal,” she continued. “I have never seen such support.”

The plastered feet, aching legs, and exhaustion were worth it, when Charlotte and Billy, together with many of their supporters, finished the 150 mile walk from Castlederg and met with a doctor at the Royal Victoria Hospital in Belfast.

On Wednesday afternoon (March 22) the clinician at the Royal Victoria Hospital agreed to prescribe Billy with the medical cannabis he so desperately needs, to work with the doctors in the United States, and to take over his care.

Through tears of relief, Charlotte said she couldn’t believe that their campaign had been successful.

“The doctor was so kind,” she sobbed. “She cried with me and said she would do everything she can to help. It was so emotional.

“I am overwhelmed. It is absolutely amazing. She is going to oversee his use of medical cannabis, which we get from Green Light Medicine.

“She is taking over Billy’s care and working with Dr Nordlii in America, which means that Billy can come home indefinitely.”

Billy will go back to Los Angeles in four weeks for what Charlotte hopes will be his final scan and then the family will return to life in the Castlederg countryside.