“It was as if someone threw you another lifeline. I was quite analytical about the legalities because the very mention of cannabis oil…I was thinking…God, you can’t give a child cannabis oil.”
Two years ago, Fiona Condren, had tried everything to try to improve the quality of her daughter Summer’s life.
Nothing had worked. And like, for any mother, the ‘C’ word had set alarm bells ringing. But anything that might have eased the distress the brave Galliagh girl was suffering on a daily basis was worth a shot, as Fiona explains.
“Summer was born significantly disabled. She has no speech ability and is doubly incontinent. She’s always had epilepsy, but back a number of years ago she was diagnosed with a very rare form of ‘feeding epilepsy’. There are not many people worldwide with this condition so it was: how do you manage it and how do you treat it?”
Following her advanced diagnosis, Summer began experiencing up to 120 bouts of debilitating ‘drop’ or ‘atonic’ seizures a day, an unimaginable burden for a young girl, and one that was hugely distressing for Fiona, her father, Martin, and her sisters Molly and Roisin.
“Her head would be going, her arms would be going, her legs were going. When you are taking that many seizure activities day and night, her quality of life was so, so poor. It was as if her wee head had no head space to think about anything else.”
Every avenue of treatment was explored. Summer stopped taking food orally, despite the fact that she loved her grub, and was fed instead through a percutaneous endoscopic gastrostomy (PEG) tube. This made a difference for 10 weeks but the seizures returned. Steroids and morphine patches made little difference. And while adherence to a high-fat ketogenic diet for over a year showed some promise a similar pattern followed and Summer’s health regressed again.
“Every type of treatment we could try. Nothing worked and it became heartbreaking.
“She was on that many different medications and with that many medications there are that many side-effects.”
Not long after her diagnosis Fiona remembers being on a shopping trip in town.
“Summer was really distressed, howling and rocking and banging, I got up to the counter and paid for my stuff, I was wearing my sunglasses and the tears were streaming.”
Shortly afterwards an acquaintance told her how cannabis oil (cannabidiol, or CBD), when taken as a dietary supplement, has been shown to significantly reduce seizures in children with severe epilepsy. Initially, cautious Fiona undertook two solid months of considered research. She was naturally concerned about the potential side- effects, how CBD might clash with Summer’s other medications, not to mention provenance. She clearly didn’t want to administer a product to her daughter that had been produced in some unregulated factory.
But the research brought encouragement. A trial of 120 children with Dravet syndrome – a rare form of epilepsy – by Great Ormond Street Hosptial GOSH) found CBD reduced seizures by nearly 40 percent. Having weighed the pros and cons Fiona eventually sourced a form of organic hemp oil from Colorado in the United States, less than 0.2 percent of which was made up of tetrahydrocannabinol (THC), the psychoactive substance famously enjoyed by marijuana or hashish smokers the world over.
Negligible and meeting the United Kingdom’s legal requirements in other words.
Summer started on the oil 18 months ago and the improvement has been monumental. Her seizures, for instance, have now reduced to bouts of 20 a day, most of which are suffered at night.
“It’s made a massive improvement,” says Fiona.
“You can see now she’s at herself, she’s really well. She’s so calm, she’s at peace with herself, there’s none of the manic banging. I do know it’s a controversial issue and I know myself that the minute cannabis oil was mentioned, I thought, hang on a minute, but it’s about raising awareness, about bringing it out in the open, making people aware this is not something that’s illegal. It’s not a taboo subject anymore. It’s something that is now being used.”
Since embarking on their remarkable journey a year-and-a-half ago Summer and the wider Crossan-Condren clan have received a further boost in the assistance and friendship of local activist businesswomen Dr Maria McGee, of the Skeoge-based Marble Hill skincare and wellness company.
Dr McGee, who imports CBD from Colorado and markets and distributes it in Ireland, having heard Summer’s story, has now agreed to sponsor her course of treatment, taking a lot of the expense and headache out of the equation for the family. Clearly, passionate about what she describes as a supplement rather than a medicine, Dr McGee explains: “It’s similar to Vitamin C or Iron. It enhances the endocannabinoids that we’ve all got. This is a top up. You can see the difference, that it’s made to Summer. It’s a wonderful thing to see. Fiona is one of the most inspirational people I’ve ever met. She went out and she found all this stull all by herself. She’s had the courage.”
A month and a half ago Fiona and Summer were up the town again but the contrast from that shopping trip two years ago couldn’t have been starker.
“I had her up the town on Halloween’ night and the many people come over and hold her hand and chat to her. She’s so much better.”