“I just wasn’t ready to give up on my son”

Lisa Quarrell was well acquainted with the police officer’s knock.

She’d delivered it many times during 10 years on the force.

The difference this time was that she wasn’t outside in a hi-viz jacket, with her patrol car parked on the street.

She was inside, freaking out about the consequences of her decision to become an illegal drug smuggler.

Not that she had any regrets. The cannabis oil she sneaked in from the Netherlands saved her youngest son Cole’s life, she believes.

Cole has ‘uncontrolled focal epilepsy’, a severe form of the condition.

His seizures began at three months old and, by age one, he was confirmed as drug resistant. The only option, according to his doctors, was brain surgery.

“They said Cole having seizures was part of his life and we had to manage it,” says Lisa, 38, from East Kilbride.

Aside from drugs, other considered interventions included the high fat, low carb ketogenic diet – which can help to reduce seizures in some children.

Doctors also discussed a technology called vagus nerve stimulation (VNS), also known as a ‘pacemaker for the brain’.

Ultimately neither were deemed suitable and surgery was all that remained.

The procedure to remove some brain tissue was carried out when he was two – but like the drugs was unable to stop the seizures over the long term.

“This became our life; Cole would have seizures most nights, through the night and some during the day. His development was affected really badly.

“He did have a good run for a few months where he wasn’t having that many seizures and he managed to go to mainstream school.

“But then he took a dip, the seizures got more frequent, more aggressive and more damaging and the school were talking about him going to a special education school.

“Then I put a post out on Facebook to say I was running out of options for Cole. Was there anything in the world that could help him?

“Everything that came back was about cannabis oil.”

Having served in the police for a decade until Cole was one, Lisa only had bad opinions of cannabis.

“Everything I thought I knew about cannabis was very negative. Not just because I’d dealt with drug dealers, but also the psychosis side of cannabis misuse.

“But looking back, what I saw was probably the wrong type of cannabis, which was street cannabis that was mixed with all sorts.

“Also, those people were on prescription drugs, cannabis and alcohol and already had underlying mental health problems. That was always my experience. Its different if you understand the workings of the plant and what good it does and how to use it.

“Its about being educated. I still get people today saying to me ‘you don’t know what the future holds for your son. You could be giving him this and he could end up really damaged with mental health problems when he’s a teenager’.

“My answer to them is ‘you’re right I don’t know, but science tells me he’ll be ok’. Also, he wouldn’t have made it to seven never mind 18 had I not given him cannabis oil.

“At one point he wasn’t eating and doctors were talking about tube-feeding him. A week after getting him on cannabis oil he was eating Domino’s Pizza!”

A turning point on Lisa’s journey towards giving her son cannabis oil was a dream trip to Disneyland Paris last year, which turned into a nightmare.

“He started having frequent seizures and by the time we came back he could hardly walk. Then he started having something called Todd’s paralysis after every seizure, which is like a stroke; he couldn’t walk or talk for up to an hour after every seizure.

“The paralysis began lasting most of the day which meant he couldn’t go to school.”

With Cole’s speech, vision, movement and memory all deteriorating, he faced an uncertain future – and was lined up for invasive testing.

This meant drilling up to 16 holes into the six-year-old’s skull to allow electrodes to be inserted into his brain. He would then be bedridden and under analysis for up to nine days to assess his suitability for brain surgery.

“Then I was told that was it for Cole. He would continue to deteriorate and die if I didn’t look at a second brain surgery operation. They said the tissue removed in the first surgery was the tip of the iceberg and the damage to Cole’s brain went deeper and wider as it got into his brain.

“They couldn’t remove the tissue because they’d have to remove practically half his brain. So I was told that the only option was to disconnect one side of the brain from the other.

“That would leave him partially sighted and paralysed down one side. At this point I had a wee boy that had been riding a two-wheeler bike, loved football, could walk, talk, run, laugh and have a pretty full life other than his seizures. There was some development delay but it didn’t stop him from having a full life.

“I thought ‘I’m not ready to give up on him yet’. I couldn’t put him through an operation that was my choice, leaving him paralysed for the rest of his life. I simply couldn’t do it. That’s when I decided to take cannabis oil seriously.”

Lisa joined support groups, met with leading medical cannabis experts and even consulted the black market. But old habits from her days on the beat die hard.

“To be honest I was looking for the negatives. I was looking everywhere for someone to confirm what I believed cannabis was but couldn’t find it.”

She initially bought CBD oil containing the legal trace amount of THC from a clinic in Barcelona.

“Within three days of taking it, Cole stopped getting paralysis after every seizure and within 10 days his walking fully recovered, having previously walked as though he had lost his balance.

“He was back at school and I’ve got videos of him running around my living room. But the seizures had only reduced from about 12 to eight a night.”

Lisa believed she was on the right track, however, and set her sights on accessing ‘full-plant’ extract cannabis medicine.

She began a very public campaign to give Cole and other children in Scotland access to medicinal cannabis.

This was just a month after the November 2018 UK legislative change that made medical cannabis with THC technically legal for prescription – a decision which almost a year on has still barely improved access.

Lisa turned to politicians in search of support and found it from Dr Lisa Cameron MP and MSPs Linda Fabiani and Monica Lennon. They demanded answers from Westminster and the Scottish Parliament.

A victory of sorts saw Cole being chosen among 10 UK children to trial the CBD drug Epidiolex – which after various delays he eventually received in February this year.

Although many children have had good outcomes with the medicine, it did not have the desired effect for Cole.

“He was paralysed again, couldn’t speak, sit up on his own or swallow. He was really sick and in March was rushed to children’s hospital.”

Lisa, the law-abiding ex-bobby, then did something she never could have imagined in her blue-light days.

“I flew to Holland with his medical records and smuggled cannabis medicine back into Scotland,” she says.

The new medicine, Bedrolite, contains nine per cent CBD and less than one per cent THC. Without an official prescription from UK doctors, she was “unsupported” so had to micro-dose Cole on the oil.

“It took about two to three weeks before we noticed any difference because he was so ill, and because the dosage was so small.”

Cole started on a drop twice a day, which Lisa was told to gradually increase every 10 days.

“Because things got so bad for Cole, I started increasing it every week and then every four days because I know that it was making him better.”

Then his recovery picked up.

“On April 5^th he stood up on his own and started to walk. By the 11^thof April he was running again. He started speaking again and now Cole’s the best version of himself he’s ever been. He’s dreaming for the first time. We just went back to Disneyland recently and it was like the first time he’d been there.”

In May, the BBC aired a documentary filmed months earlier; in which Lisa said on camera that she had smuggled cannabis into the country and had no regrets about saving her son’s life.

“Of course the papers got hold of it. For about a week there were headlines like ‘ex cop drug smuggler’. There’s no way a journalist wasn’t going to jump on it, let’s be honest, it was a great story,” she laughs.

It wasn’t funny at the time, however, when two detective sergeants paid her a visit.

“They said that criminally they weren’t going to investigate me but because I had children, as a single mum, and had admitted to smuggling illegal substances in and given them to my son, then I would have to be investigated for child protection issues.”

A lengthy process ensued in which Cole’s GP, hospital consultants and school teachers were asked their opinion of Lisa as a parent.

A panel ultimately decided not to pursue the case. Lisa finally received the relieving news on Cole’s seventh birthday, after weeks of nervous anticipation.

Cole’s medicine is now entirely above board, secured via a private prescription and a Scottish importer.

Instead of paying upwards of £600 per bottle from importers who charge a significant mark-up, this individual charges £158 – the same cost as buying it over the counter in Holland.

Even on this lower rate, Lisa is forking out around £880 a month for Cole’s medicine. This could spiral to almost £3,500 with an importer charging the standard commission.

“The importer has been a life-saver to be honest. He doesn’t charge any families any commission, he charges exactly what it costs him and so he’s not making money out of sick children.”

Cole was the first child to have his medicine legally imported into Scotland. His mum and the importer then supported other families in following the same route.

The pair also recently spoke at the Scottish Parliament about the desperate need to open up access to cannabis medicine for children.

This triggered a cross-party support letter signed by MSPs from every party asking the health minister, Jeane Freeman, and first minister, Nicola Sturgeon, to fund cannabis medicine for families that need it until it is readily available on the NHS.

“I showed the MSPs a video of Cole when he got so sick that he couldn’t even say ‘I love you mummy’. I showed them one of him having a seizure and then from every couple of days after the cannabis medicine, standing, walking, running, riding his bike, jumping, climbing, playing football. Every MSP was so moved and there wasn’t a dry eye in the room.”

The letter, sent in September, has not yet been acted upon; but Lisa is hopeful of an eventual breakthrough.

“There’s no getting away from the issue. It ticks all the boxes and it’s got cross-party support,” she says.

In meantime, Lisa is wrapped up in Cole’s ongoing progress.

The running, jumping and belting footballs in the park are the the obvious signs of improvement. But then there are the subtle changes that only loved ones behind closed doors see.

“He’s been having flashbacks from when he got sick, which is weirdly a good thing because it means his brain is working properly.

“Previously he was always quite subdued and didn’t show much emotion, he didn’t sleep long enough to dream and didn’t have any excitement or big reactions to anything.

Now he’s screeching so much from everything he finds exciting that he’s nearly lost his voice. His wit and sense of humour have also got so much better.

“He now talks about when he was sick and how he never wants to be like that again.”

At the time of writing, Cole has had no major seizures since April, and just two minor ones in that time, lasting less than 10 seconds each. At his most poorly he was having 10 to 15 every night and sometimes during the day.

Lisa’s hope for the months ahead is that he can stop taking the one pharmaceutical drug remaining in his daily routine and rely purely on the medical cannabis.

“That drug is toxic and has had the side-effect of preventing his adult teeth from forming in his gums, which is giving him toothache almost fortnightly.

“He’s on a small dose but the doctors won’t consider taking him off it just yet until they know more about the cannabis.”

Raising awareness of cannabis medicine among healthcare professionals and politicians has become something of a crusade for Lisa.

She has presented Cole’s story to them at several official gatherings and works closely with the campaign group Medicinal Cannabis Reform Scotland to open up access for families.

“I tell doctors and nurses about what medical cannabis can do and say ‘don’t take my word for it, go and find out for yourself’, and that’s what they’re doing.”

Read more stories like Lisa’s here.

Go to Cole’s fundraising page.

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