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Family turns to cannabis as hope runs out

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A family turns to cannabis to relieve a daughter’s suffering

Across Australia families of sick and disabled children are turning to cannabis extracts to relieve seizures, pain and nausea. After conventional drugs failed to help, the Dell family turned to a cannabis oil supplier to help their daughter Abbey.

The Department of Family and Community Services officer pulled up next to the low brick wall, tucked the clipboard under her arm and made her way up the cracked paved driveway towards the locked security screen door. Inside, Kaos the dog pulled down the Spiderman blanket covering his cage in the middle of the living room and began to howl.

It had been 15 months since the department had taken an interest in the Dell family, following atip-off from former ACT Chief Minister Katy Gallagher that they were giving marijuana to one of their six autistic children. Now they were back, and Cherie Dell’s heart rate began to quicken.

I can’t give up on my baby – I won’t

Cherie Dell

As she reached for the purple spray bottle to give the barking dog a squirt, Cherie paused to survey the boxes of medical equipment, unsorted washing piled high on the sofas and general mayhem in front of her. She hadn’t chosen the name the breeder had given the excitable white staffie with the brown spots, but as she looked around she thought, “chaos sounds about right,” and so the name had stuck.

Trevor Dell competed in the Canberra Times fun run in the hope of meeting then Chief Minister Katy Gallagher. He is wearing the T-Shirt he had made to raise awareness of his daughter's condition.
Trevor Dell competed in the Canberra Times fun run in the hope of meeting then Chief Minister Katy Gallagher. He is wearing the T-Shirt he had made to raise awareness of his daughter’s condition. Photo: Rohan Thomson

Life had gotten a little easier since the dog had arrived. Her youngest daughter Abbey, who had received the pet as a companion, had finally started putting on weight and the terrifying seizures that made her tiny fists clench tight and her eyes bulge out of their sockets had become less severe and less frequent. After spending more than half of her short life in hospital, Abbey’s family had recently celebrated 12 months without a trip to the emergency department. Finally something good was happening. Now the department was knocking on the door again.

It had all started with a phone call, as she bundled her children into the Ford Territory for the morning run to school.

“Is that Cherie Dell?” the unfamiliar voice on the phone asked.

Trevor Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder CDKL5.
Trevor Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder CDKL5. Photo: Rohan Thomson

“I’m from the Department of Family and Community Services, and I need to speak to you urgently about your daughter Abbey.”

“I can’t talk now,” Cherie said, hanging up and stuffing the mobile phone back into her jeans.

As she tried to coax her eldest daughter Tahlia to sit down and fasten her seatbelt the phone rang again. And again, and again, and kept ringing, until eventually she could ignore it no longer.

Cherie Dell gives her 3-year-old daughter Abbey a dose of cannabis oil to treat the seizures caused by a rare genetic disorder, CDKL5.
Cherie Dell gives her 3-year-old daughter Abbey a dose of cannabis oil to treat the seizures caused by a rare genetic disorder, CDKL5. Photo: Rohan Thomson

“What?” she said, stabbing at the phone with her thumb.

“We’ve had a report that you are giving your child an illegal substance, and we need you to come in for an interview,” the voice said.

Last hope

Abbey Dell, who was born with a rare genetic disorder CDKL5.
Abbey Dell, who was born with a rare genetic disorder CDKL5. Photo: Supplied

As Cherie had knelt on the living room floor with a syringe of cannabis oil between her teeth for the first time, she had thought about what would happen if they ever got caught. They knew it was a risk, but what choice did they have left?

Looking up from the unmoving body of her profoundly disabled daughter on the floor in front of her, she locked eyes with Abbey’s father Trevor.

Like the other families they had sought out for help, they hadn’t arrived at this point easily. They knew cannabis would probably just be the latest in a long line of disappointments, and its effectiveness was largely untested on CDKL5 patients – the crippling rare genetic disorder that had left Abbey unable to walk, speak or eat without a tube.

Trevor and Cherie Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder, CDKL5.
Trevor and Cherie Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder, CDKL5. Photo: Rohan Thomson

The doctors had all-but given up hope, but Cherie couldn’t. Besides, it couldn’t be worse than what they had already tried.

The Sabril one doctor had prescribed was known to send some users blind, so that was out. The high-dose steroids had done nothing useful, and the Clonazepam drops – the worst of them all – had left Abbey in a catatonic state, barely able to breathe on her own. Worse, the pharmaceutical cocktail they had poured into their child every day for the last 24 months had failed to stop the 20-minute seizures from blowing out to 45 minutes at a time. They had tried to keep their expectations low ever since the small brown bottle had arrived in the post. But for the first time in months they had allowed themselves to hope, not for a miracle, but just something – anything positive.

The actual number of children being treated with cannabis in Australia is impossible to know, with most families living in fear of either having their supply cut off or having their children taken away by child protection authorities.

3-year-old Abbey Dell at home with her family.
3-year-old Abbey Dell at home with her family. Photo: Rohan Thomson

While cannabis use among adults is common in Australia (around a third of the population have tried it at least once – one of the highest rates in the world) the continued prohibition on any form of the drug has created a medical black hole, where doctors live in fear of deregistration for discussing it openly with patients, and desperate families take their chances on the black market with products of uncertain quality and strength.

A recent surge in support for medicinal cannabis use in Australia and a wave of legalisation sweeping across 23 jurisdictions in the United States has led a number of states and territories, including the ACT and NSW, to launch inquiries or announce trials into providing safe access to the drug for those who have exhausted all legal treatment options.

Advances in genetics and breeding in recent decades have also created strains of the plant low in the active compound that gets users high, Tetrahydrocannabinol (THC),  but still rich in other non-psychoactive cannabinoids like Cannabidiol (CBD) valued for its pain and nausea relief properties as well as use in reducing seizures.

At the home of Cherie and Trevor Dell who treat their 3-year-old daughter Abbey with cannabis oil to treat CDKL5, a rare genetic condition.
At the home of Cherie and Trevor Dell who treat their 3-year-old daughter Abbey with cannabis oil to treat CDKL5, a rare genetic condition. Photo: Rohan Thomson

But with no legal source in Australia, many parents find themselves juggling their children’s’ doses, upping or lowering the ratio of CBD to THCA, swapping treatment advice with each other on social media rather than with their doctors.

Despite high-profile cases like that of 25-year-old NSW bowel cancer suffer Dan Haslam thrusting the issue back into the political spotlight, cannabis prosecutions in Australia continue to skyrocket.

According to the Australian Crime Commission’s latest illicit drug report, police made a record 66,684 cannabis arrests across Australia in 2013-2014, the highest in a decade. Of those arrested, 87 per cent were consumers.

Abbey Dell, who was born with a rare genetic disorder CDKL5.
Abbey Dell, who was born with a rare genetic disorder CDKL5. Photo: Supplied

While police typically show little appetite for arresting cancer patients or parents of epileptic children, most remain wary of disclosing their use. When the NSW government recently asked terminally ill patients to sign a register allowing police to turn a blind eye to their cannabis usage, just 40 signed up.

 

 

 

Source: Family turns to cannabis as hope runs out

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