Daily Mirror (Northern Ireland)
Xmas heartache for battling Billy
Brave boy desperate to return home from Canadian treatment
BILLY Caldwell, the sick lad who forced the British Government to move on legalising medicinal cannabis, is in exile in Canada.
The 13-year-old travelled from Co Tyrone to Calgary with his desperate mother Charlotte six weeks ago to seek new medication.
The effectiveness of his previous treatment had plateaued and his seizures were returning as he grew bigger and heavier and started puberty.
With no new hope for him in the UK, a worldwide search for suitable medication led Billy and his mum to a city 4,000 miles from home.
And now they have no way back because new rules introduced by the Government mean Charlotte cannot find anyone in the UK to write her son’s prescription.
She said: “We were assured of help from the Belfast Trust but now I have been advised the doctor who had said she would support Billy’s medication and prescriptions will not support them so we are stranded, exiled from our home.
“It’s hard to believe Billy is now 13 years old. I was told he’d not see his first birthday never mind be alive more than a decade later.
“Billy has being prescribed medicinal cannabis product for a total of two years and two months, supervised by medical professionals.
“On Monday, June 11, Billy’s medicine was confiscated at London Heathrow.
“Four days later Billy was rushed to Chelsea and Westminster Hospital in back-toback status seizures.
“The following morning his medicine was returned via taxi from the vaults of the Home Office. It really was history in the making.
“On June 19, the Home Secretary Sajid Javid announced a full review of the medicinal benefits of cannabis and thankfully, with his medication returned, Billy made a full recovery and we travelled home to Northern Ireland.
“Incredibly, and to our great delight, what followed was another two families were also granted supervised access to the cannabis medication they needed.
“And while Billy and I are exiled 4,000 miles from home with no chance of a prescription in the UK, today those same two families continue to have access to the meds they need.
“It is wonderful for them and it must continue, but it leaves me asking why is Billy being treated any differently.”
The Castlederg boy’s seizures started to break through in October and he had an emergency consultation.
Charlotte added: “Quite rightly, Billy’s medical team said they were not trained or educated in medicinal cannabis and they felt they had to be cautious about introducing another treatment for Billy without the expertise. When I said the only option
CALGARY YESTERDAY
for Billy would be for me to seek urgent advice from experts in medicinal cannabis back in Canada, they stated they would support whatever was decided by them. “On November 2 we travelled to Calgary and Billy underwent a lengthy consultation with an expert and he stated Billy had plateaued on his present meds.
“I was advised this was not unusual as Billy’s body and condition are evolving and changing.
“Billy has started puberty and according to experts this can happen to many patients accessing medicinal cannabis. And that’s why it’s imperative our doctors in the UK are urgently educated and trained in the use and benefits of medicinal cannabis and a wide variety of strains are made available to all patients.
“No single medical cannabis product will work for everyone.”
Billy has now been prescribed three different medicinal cannabis products, two of which are uniquely procured for him to treat his endocannabinoid system and hopefully provide better seizure control. But his medical team back home say they cannot support his new prescription.
Charlotte said: “So we are exiled from our home, isolated once again from our family and friends. “I’m working extremely hard with relevant government departments and legal teams to expedite our return home in time for Santa but going is slow.
“However, the good news is Billy is improving on his new cannabis medication and never fails to melt my heart. I will not give up on my wee warrior.”