Parents of children with epilepsy urge cannabis medication to continue

Parents of children with severe epilepsy urge government to intervene after Brexit stopped supply of ‘life-saving’ cannabis medication from the Netherlands – with supplies set to run out in weeks

• Around 40 children suffering from severe epilepsy in the UK rely on Bedrolite oil 
• Tannine Clarry, 32, fears losing access will set back Indie-Rose’s progress
• Emily Howis said drug reduced 22-month-old Clover’s 30 seizures a week to one 
• Government confirmed it is liaising with its counterparts in the Netherlands 

Terrified parents of severely epileptic children are warning of the dire health consequences if Brexit continues to halt imports of vital medicinal cannabis.

They have demanded the Government urgently strikes an agreement with the Netherlands to continue procuring the ‘life-saving’ Bedrolite oil their children rely on.

Supplies were previously guaranteed through EU membership, but Dutch law bans the trade of certain medicinal drugs and the divorce deal did not include arrangements to safeguard this.

Around 40 children suffering from severe epilepsy in the UK are believed to use the drug – and parents are warning their existing stocks will run out within weeks.

Tannine Clarry, 32, fears that losing access to the prescription will cost her six-year-old daughter Indie-Rose her independence and set back years of progress.

The child, who was born with Dravet syndrome, a catastrophic form of epilepsy, was barely able to walk or talk before being given a new lease of life by the CBD oil.

Another mother, Emily Howis, 36, said the drug reduced 22-month-old Clover’s average of 30 seizures a week to just one.

That her daughter now risks foregoing the treatment she branded a ‘disgrace’ and said: ‘I can only imagine how bad her seizures will get without it.’

Tannine Clarry, 32, fears that losing access to the prescription will cost her six-year-old daughter Indie-Rose her independence and set back years of progress

Another mother, Emily Howis, 36, said the drug reduced 22-month-old Clover’s average of 30 seizures a week to just one (Father Spencer Carkeet pictured)

Hannah Deacon said she had only learned of the change in policy surrounding medical cannabis less than two weeks before the Brexit transition period came to an end on December 31. Pictured: Ms Deacon and Alfie Dingley

Her demands for ministerial action were echoed by campaigner Hannah Deacon, who tirelessly fought for medicinal cannabis to be legal to treat her nine-year-old son Alfie Dingley.

She said: ‘This is not about the politics of Brexit. It’s about children’s lives being at stake. Boris Johnson must step in, work with the Dutch Government and help us.’ 

The Government confirmed it is liaising with its counterparts in the Netherlands to keep the flow of the drugs.

Ms Clarry, from Clare Suffolk, spent three years trying to find the right treatment for Indie-Rose before she finally discovered the instant remedy effects of Bedrolite.

Faced with the prospect of losing access to the drug, she said: ‘I am worried her seizures will increase again, any change to medication with epilepsy is dangerous and we can’t predict what might happen now.

‘All we want is the government to really look at this problem and help us, we are not asking for a lot.

‘We finally found this oil for Indie-Rose, and less than a year later, after watching her progress to such an extent, we’re now going to watch her illness take her over again.’

She recalled how Indie-Rose would endure up to 50 seizures each month because of the debilitating genetic disorder. 

The episodes were so bad that her daughter would not even recognise her younger brother, and while traditional forms of treatment ‘numbed’ the effects, ‘it didn’t give her a chance to be kid, she was always out of it.’ 

Indie-Rose who was born with Dravet syndrome, a catastrophic form of epilepsy, was barely able to walk or talk before being given a new lease of life by the CBD oil

Ms Clarry, from Clare Suffolk, spent three years trying to find the right treatment for Indie-Rose before she finally discovered the instant remedy effects of Bedrolite

The anxious mother spent three years fighting for Indie-Rose to get the appropriate treatment, including spending half a year in Holland to secure the Bedrolite oil.

She recalled how Indie-Rose slept through the night before recognising her brother for the first time. ‘I broke down in tears seeing that,’ Ms Clarry said. 

Ms Clarry has since spent £34,000 on prescriptions and even took to making her own CBD oil which she uses to help other families. 

But she said her own oil does not match the effectiveness of the Dutch-manufactured drug and is urging for an arrangement between the governments of London and Amsterdam.

She said: ‘We have watched Indie-Rose grow into this bubbly excited girl since she’s had the right treatment and the thought of that stopping it painful, I don’t think any mother or father should have to go through this.’ 

Her fear has been shared by Ms Howis, from Frome Somerset, who said her ‘heart fell out of my body’ upon hearing that Bedrolite supplies could stop.

Her daughter Clover Carkeet was diagnosed with Aicardi syndrome at 12 weeks old, meaning she has many brain abnormalities, including absent or underdeveloped tissue connections between the left and right halves of her brain, which cause seizures. 

Ms Howis said: ‘We felt like we were finally settled and had finally found something that controlled Clover’s seizures, and suddenly it was being taken away from us – and within a matter of weeks.’

She explained that they had 10 weeks worth of supplies left and had ordered another three months’ worth – but are no longer sure if this will arrive.  

She went on: ‘It is a disgrace that our medication has been blocked. We are special needs parents – it’s already tough with all the challenges at every step of their lives.

‘You would expect access to medicine that improves their lives, not being blocked from it.’

Ms Howis, from Frome Somerset, who said her ‘heart fell out of my body’ upon hearing that Clover’s Bedrolite supplies could stop

Clover Carkeet was diagnosed with Aicardi syndrome at 12 weeks old, meaning she has many brain abnormalities, including absent or underdeveloped tissue connections between the left and right halves of her brain, which cause seizures

The doctors told Ms Howis and partner Spencer Carkeet, 48, that their daughter would likely never walk or talk, and that she would lose the skills she had developed so far. 

The mother described Clover’s early days as ‘the lowest and darkest time of my life’ as the effects of her illness became clear. 

She said: ‘Doctors told me when I was 30 weeks pregnant that Clover had some anomalies in her brain.

‘We knew lots of people went on and lived completely normal lives with this anomaly and Clover was born at full-term in perfect health.

‘But when I picked her up from a nap one morning when she was 12 weeks old, her legs kept giving way and her eyes were rolling back.

‘I knew she was having a seizure immediately and took her to the hospital.

‘I was devastated by her Aicardi diagnosis and genuinely thought I was going to have a child that was a vegetable from then on.

‘It was the lowest and darkest time of my life.’ 

The doctors told Ms Howis and partner Spencer Carkeet, 48, that their daughter would likely never walk or talk, and that she would lose the skills she had developed so far

In June 2019, Clover was prescribed a six-week course of steroids – but the side effects were horrific for the young girl, who became ‘a lump’.

Ms Howis said: ‘She was put on a very high dose, more than an adult would take, and the side effects were horrendous.

‘She didn’t smile or move anymore and became like a lump that we fed and tried to get to sleep.

Bedrolite: Medical cannabis oil which helps children with severe epilepsy

Bedrolite oil is a medical cannabis oil produced by Bedrocan, which is the sole supplier of medicinal cannabis in the Netherlands.  

The oil contains two active compounds in cannabis for medical use: THC, which is psychoactive, and CBD, which is not.

Bedrolite has around nine per cent CBD and less that one per cent THC.     

According to Bedrocan, the small percentage of THC means the oil does not have psychoactive properties.

‘Bedrolite has become the preferred choice of a number of patients with severe, intractable (untreatable) forms of epilepsy,’ they said. 

Medical cannabis products which contained THC were illegal in the UK until November 2018. 

‘There was nothing behind her eyes, it was like someone had turned the light out.

‘She wouldn’t engage or play, she would just lay there staring into space.

‘It was devastating to watch. She went from being such a happy, bright little girl to almost being nothing.

‘She woke every 45 minutes through the night and I became a shell of a person, getting no rest.

‘The steroids also made her gain a lot of weight and her cheeks became so swollen I could barely see her beautiful brown eyes.

‘It kept us going to know that it was temporary and we checked off every day on a calendar until she came back to us.’

As Clover was weaned off of the steroids in July 2019, ‘glimpses’ of her former self came back, but the medication hadn’t managed to control her seizures.

By March 2020 Clover was suffering more than 30 clusters a week – with each cluster itself involving around 30 seizures and lasting between five to 15 minutes.

Ms Howis said: ‘Things were getting worse rather than better. Clover was crying after every spasm and all I could do was cuddle her and try to reassure her.

‘It is awful seeing your child in pain and not being able to do a thing about it. It is totally out of my control and just devastating.

‘The drugs that the doctors were offering would affect her development.

‘We wanted to opt for something that gave her quality of life rather than turning her into a vegetable.’

After doing research online, the she contacted Ms Deacon, whose son Alfie was the first child to be granted access to medical cannabis in the UK.

Ms Deacon put her in touch with a clinic that was able to help secure a prescription for Clover and she started taking the treatment in August 2020, taking the oil twice a day.

Ms Howis said: ‘We saw a dramatic difference in Clover within a week. Her seizures started to decrease every week and by November she was only having between one and three clusters a week.

‘The seizure control is incredible and as we increased her dose, we saw improvements in her communication too. She’s even started to speak, which makes my heart sing.’ 

Ms Deacon said: ‘Sadly, this bombshell blow to the 42 families affected is just another development in a long line of events which show the legalisation of medicinal cannabis has completely failed.

‘The 2018 law change took years of hard-fought campaigning, so it is utterly appalling that despite having years to prepare for Brexit, the Government gave us just two weeks’ notice that we will lose access to the one treatment which has drastically improved the lives of our very sick children.

‘Medicinal cannabis products are incredibly complex, and they cannot be interchanged easily.

‘Being told to withdraw our children’s treatment does not just mean picking something else up from the pharmacist instead, it is incredibly dangerous and risks putting them in hospital, or even death.

‘We are making a desperate plea to the UK and Dutch governments to work together to find a long-term solution to this crisis.’

A Government spokesperson said: ‘We sympathise with patients dealing with challenging conditions and we are working urgently with the Dutch government to find a solution which will enable patients to access the medications they need.’ 

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