What would you do if you knew the medicine that could save the life of your child were legally available in another country? Resign yourself to accepting the situation and make do with what’s available at home, or take matters into your own hands?
An ever growing number of parents are refusing to accept that their geographical location should determine the health of their child. Instead they have decided to uproot their family and travel across state, country borders or even an entire continent to get the treatment they believe will save their child’s life.
One would imagine we’re talking some state-of-the-art medical advancement that’s so new barely any doctors are prescribing it. But no, families are making these drastic choices for a plant that has been used medicinally for thousands of years, but it’s only in the last eighty that it has been prohibited worldwide.
Cannabis - the schedule 1 controlled substance deemed lacking any therapeutic use - is the plant in question.
Despite international prohibition for any member state that signed up to the UN Single Convention on Narcotic Drugs, certain countries and states in the US have legalised the medicinal use of the plant. Colorado and California were the trailblazers in the US, while across the pond Holland and Germany have followed suit.
Charlotte Figi story draws epilepsy children to Colorado
But it was Colorado in particular that first became a destination of choice of desperate parents seeking medical cannabis treatment for their children. Many, but not all, had severe cases of epilepsy and were drawn by the seemingly miraculous improvement in the health of Colorado resident Charlotte Figi after taking CBD oil.
Soon the state was awash with families not only from other parts of the US where medical cannabis was illegal, but countries as far afield as Ireland and Spain. Cases such as Tristan Forde, a sufferer of Dravet Syndrome, the same debilitating rare condition as Charlotte Figi, whose family travelled from Dunmanway, Ireland.
Tristan’s mother Cahalane told the Guardian Newspaper, “we’re not going to choose the option of being criminals with this in Ireland. We don’t want to do things illegally, and we don’t want to do it without a doctor.”
Another Colorado medical cannabis refugee is six year old Novaleigh who has Schizencephaly, a neurological disorder in which a substantial part of the brain does not form in utero. Seizures often accompany the condition, which was no exception in the case of Novaleigh who would suffer up to a hundred a day. Medication failed to make any difference, and so out of desperation her parents moved from Texas hoping that their daughter would respond to the medical cannabis protocol that had reduced seizures in so many other children.
They were not disappointed as Novaleigh has experienced ‘phenomenal results’ which include not only a reduction in seizures, but also unhoped for developmental improvements.
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Northern Irish boy finds hope in California
California has also had its fair share of cannabis child refugees. Northern Ireland’s Billy Caldwell being perhaps the most well known of late. The 11 year old with intractable epilepsy, received treatment in California, which included CBD oil plus THCa, the acid precursor of THC which halted his seizures. It was this THC component that was illegal in his native Northern Ireland. His mother feared for Billy’s future should he return home and be deprived of the treatment she believed was saving his life.
She told Belfast Live, "after surgery Billy is still going to need CBD and the THC which is illegal in Northern Ireland. Effectively Billy is now a cannabis refugee because we cannot bring him home with this treatment, I would be arrested.”
Her fears were allayed when the family doctor in their hometown Tyrone decided to issue a prescription for CBD and THCa, meaning that Billy was the first person in the UK to be prescribed medical cannabis other than Sativex for multiple sclerosis. Billy is now more than 300 days without suffering a seizure.
Ava Barry gets the treatment she needs in Holland
Travelling across the Atlantic poses severe health risks for a child with epilepsy, not to mention the added financial expense. That’s why many parents look for an alternative closer to home. A favourite is the Hague in Holland, current home to Ava Barry, the 7 year old Irish girl who also has Dravet Syndrome.
Ava came to worldwide prominence when her mother Vera went from housewife to ardent activist, walking from her home in Cork, Southern Ireland to the country’s Parliament in Dublin. She was protesting for the right for her child to be prescribed medical cannabis. CBD oil was already legally available as a food supplement, but Vera believed that her daughter stood the best chance of being seizure free if she was given an oil containing CBD with a small amount of THC.
No pediatric neurologist in Ireland was willing to recommend this for Ava and so her parents moved the entire family to the Hague over the summer. As the time came for Ava’s siblings to go back to school, Vera returned with them to Ireland leaving Ava in Holland under the care of her father Paul. The traumatic family separation was captured in the report below on Irish TV.
Since being in the Hague Ava has been seizure free, but as in the case of any of the families who have left their home in search of medical cannabis treatment, they are relying on the generosity of others to help fund their stay. So far on Ava’s Gofundme page, almost 40,000 Euros have been raised through individual donations and fundraising events. But most of all Ava’s parents just wish that they could bring their daughter home and be together again.
In the British press yesterday, a family announced that they too wished to follow Ava’s lead and try medical cannabis treatment in the Hague. The parents of five year old Alfie Dingley, who has a rare form of epilepsy called PCDH19, hope that a move to Holland where he will receive medical cannabis treatment will also reduce his seizures. His mother Hannah said, “it’s been very traumatic couple of years for us as a family, but we are willing to do absolutely anything it takes for him to be well.”
They’ve set a target of £15,000 which they hope to raise through their JustGiving Page.
And the list goes on. These are just the examples of parents risking everything for the health of their child that make it into the press. Many prefer to remain anonymous, frightened about the repercussions back home if social services found out about their decision to give their child cannabis.
This insanity has got to stop. The cannabis plant must be rescheduled internationally, so that individual governments can no longer use the UN convention as an excuse to keep their heads in the sand. Parents should not be penalised for doing the best for their child. It is our governments’ responsibility to acknowledge that cannabis is not the dangerous pariah they conveniently think it is. The health of our children matters and they deserve to be given the most effective treatment available, even if it does come from a plant and not a pharmaceutical company laboratory.