12 years ago, in County Tyrone, Northern Ireland, when Charlotte Caldwell gave birth to her son Billy, he was a completely normal little boy. Circumstances quickly changed when four months and hundreds of epileptic seizures later, Billy was diagnosed with severe epilepsy. The pair then spent the next 16 weeks in the hospital where Billy was medicated with, tells mom Charlotte, “every different pharmaceutical medication you could think of.” After no available seizure medications worked, then eight-month-old Billy was “sent home to die” by doctors in Belfast.
Charlotte refused to accept the diagnosis and fundraised for Billy to have access to international treatment. “Even though he was having all those seizures every single day and every single night. I knew in my heart of hearts that he was dying, it was only going to be a matter of time because of the severity and the frequency of the seizures,” Charlotte told RSVP Live.
The fundraising proved successful, and mother and son were off to the United States to see Chicago-based epilepsy specialist, Dr Douglas Nordli. After intensive treatment, under Dr Nordli’s care, Billy’s condition stabilized but, due to the hundreds-a-day seizures, then two-year-old Billy “couldn’t hold up his own head; he was just lying there completely depleted.” Mother continued to fight for son, however. With two-year-long physiotherapy, Billy was slowly taught how to sit, crawl, stand, and eventually walk.
The treatment was able to stop seizures for eight years. The pair returned home to Northern Ireland. His quality of life improved with the significantly reduced seizures Billy was fine until June 2016, when he woke up and his seizures were back “with a vengeance.” After again unsuccessfully seeking help in Northern Ireland and the UK, Charlotte went back to Dr. Nordli, now based in Los Angeles.
Dr. Nordli discovered Billy’s return of life-threatening seizures was the result of a brain lesion, caused by earlier untreated brain damage. As his brain grew, so did the damaged area. A proposed surgery would remove the left temporal lobe which would have affected Billy’s memory and speech. His mother was reluctant to pursue, saying “we would have been back to square one.”
It was then that Dr. Nordli recommended cannabis oil, which over the past two years has managed to shrink the lesion. The cannabis oil contains both cannabidiol (CBD) and tetrahydrocannabinol (THC). The CBD cannabis spectrum oil has resulted in her little boy being seizure-free.
After much hassle, in 2017, Billy Caldwell became the first person prescribed medical marijuana on the NHS. Not long after, in May 2018, she went to renew the prescription and was told it would not be possible. Billy’s NHS doctor, Brendan O’Hare began writing the prescriptions. The doctor was then summoned to a meeting with Home Office officials and told to stop. Dr Brendan O’Hare said there is an ethical issue is not allowing Billy to have CBD.
In June 2018, Charlotte made an attempt to bring the medication and her son into the UK from Canada. She travelled “halfway around the world” to get the medication necessary to keep her son alive. Billy’s CBD was confiscated by airport officials at Heathrow Airport. Billy began to again have multiple seizures per day. He was taken to the Chelsea and Westminster hospital on a Monday and the oil did not arrive until Saturday.
His medication was only administered under a special 20-day licence and is not allowed to be taken home. The Home Office said it was an “exceptional licence” for a “short-term emergency.” Charlotte told reporters, “My experience leaves me in no doubt that the Home Office can no longer play a role in the administration of medication for sick children in our country…Children are dying in our country and it needs to stop now.” As of now, Billy’s mother’s fight continues.