MY life changed forever more than six years ago when my younger son Cole began taking seizures when he was just three months old. A year later he was diagnosed as having uncontrolled drug-resistant focal epilepsy.
By the time Cole was two he had tried 12 different medications. All unsuccessful, as was brain surgery, a lesionectomy on his left temporal lobe in Edinburgh Sick Kids Hospital.
Most of Cole’s seizures were through the night so we didn’t get much sleep and what we did get was continually interrupted. This had a massive impact on the whole family. It hit my career in the police as I could no longer work shifts and was forced to give it up to look after Cole. My elder son Dylan, who is now nine, has had to spend many nights at his gran’s while I was in hospital with his wee brother.
Everything became even worse in October 2018, when for the first time Cole’s seizures began having a physical impact on him and he began suffering from Todd Paralysis. This includes stroke-like symptoms after every seizure, when Cole would lose the ability to walk, talk or move.
Cole’s consultant told me if we couldn’t stop the seizures he would continue to deteriorate and could die. I was told his only option was a second brain operation. The surgical team in Edinburgh told me they would first have to use a robot to drill holes in my child’s head to check if surgery was even an option. If they did go ahead with the operation there was a high possibility Cole could be left paralysed down his right side and partially sighted.
Those risks made me take to social media to seek alternative treatment options. The feedback suggested cannabis oil, which had been mentioned to me before but I was too concerned to try it.
After 10 years as a serving police officer I knew I had to find out everything I could to be certain cannabis was the treatment that would save my son. At that time my opinion was a very uneducated one and, like many people, I believed cannabis to be a demon drug which caused mental health problems.
Thankfully I researched further, went to talks by professors who specialise in the cannabis plant, joined support groups and met people who had been treating their loved ones and especially their children with cannabis oil. One of the groups which really helped was Medicinal Cannabis Reform Scotland which is run by Bernadette McCreadie, a long-standing campaigner, and Lynn Cameron, a terminal cancer survivor due to cannabis oil.
I reached out on social media and met Karen Gray, another mum who had been fighting to access whole-plant medical cannabis for her son Murray. Together we formed Parents of Hope, which was launched at Hamilton Academical’s football stadium, the then named Stadium of Hope, in November 2018.
The campaign took me first to a clinic in Barcelona where I had a Skype consultation with a doctor who told me the best legal cannabis oil to start using on Cole. In the first week I noticed an improvement in Cole’s walking and his Todd Paralysis completely stopped, although there was not a big improvement with his seizures.
I knew then that we were on the right track. The cannabis oil I had been using did not contain THC, which I believed was what was needed to stop Cole’s life threatening seizures.
A few weeks later, after a huge and very loud campaign, Cole’s name was picked out of a hat to receive one of only five prescriptions for Epidiolex in Scotland. Epidiolex does not contain the THC I knew my son needed, but I agreed to try this on Cole.
Not only did it fail to work but Cole’s health began to decline so fast that even the clinical team around him said they’d never seen anything like it. His Todd Paralysis had returned and I started to lose my son again, only this time faster than I’d ever imagined.
In the space of three weeks Cole had gone from riding a two-wheeler bike to being unable to walk, talk or move and was starting to lose the ability to swallow.
Karen and I decided to travel to Holland with our boys’ medical records to beg for help from doctors there who used whole-plant medical cannabis oils to treat patients. We both agreed that only approved and regulated medical cannabis would be acceptable and that we needed a whole plant containing a low amount of THC.
This meant that what we were about to do was illegal and could mean jail time or – worse – having our kids taken into care. Our alternative: watching our boys continue to suffer and die.
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We finally met a doctor who, after assessing our boys’ medical records, agreed to prescribe whole-plant medical cannabis containing THC. I will never forget that feeling when he gave me the prescription. I jumped across the table and hugged him while crying tears of relief.
That relief turned to panic thinking about walking through the airport with illegal drugs in my case. This was not a decision I made lightly. We had always wanted to do everything the right way and not rely on underground dealers or use oil that wasn’t approved or regulated, but lack of support from the NHS and the Government drove us out of Scotland and forced us into that position.
I feel we had no choice because the system is so broken it forces vulnerable desperate parents to criminalise themselves in order to save their child’s life.
I arrived home to start Cole on his new oil and within a few weeks I started to notice a small difference. As I increased his dose, I noticed a bigger improvement. He began walking again, then talking again. He was even eating pizza and running for the first time in over two months ... something I had given up hope at ever seeing or hearing again.
Cole’s seizures stopped on April 1 and today he is still seizure-free. He is back riding his two-wheeler bike. Because he can now sleep properly he’s started dreaming for the first time in his life and is feeling emotions that he was numb to before due to drugs he was prescribed.
Thanks to cannabis, a plant given to us by Mother Nature, I have my son back and I will be forever grateful.
My journey to access the right oil was recorded by the BBC Disclosure team and after the programme was broadcast I was visited by two detective sergeants who informed me I would be investigated for child protection concerns after admitting to illegally smuggling drugs for my son.
Thankfully Cole was given a private prescription in London in May and so all investigations were dropped.
After the documentary, a local import company contacted me offering to help import Cole’s oil into Scotland so I didn’t need to continue breaking the law by travelling to Holland or pay the extremely high prices I’d been quoted from other importers.
Last week Cole was the first child in Scotland to have his oil legally imported and available to collect from a local pharmacy at the same price as I would be paying in Holland.
Unfortunately, the NHS – bound by British Paediatric Neurology Association guidelines – continues to refuse to allow me compassionate access and I have to fund Cole’s oil, at a cost of £700 a month. The NHS will not prescribe it or fund my private prescription until they have their own evidence.
Currently, two children in England have an NHS prescription for the oil I use and have done for over a year. Both of them are thriving and yet I’m being told it is unsafe for my son.
My son almost died. I believe if I had not acted he wouldn’t be here today. Only last week one of the boys in our campaign group, Riley, died during a seizure after being denied access to medical cannabis.
The people put in powerful positions to serve our country need to step up and help our children. The system is making our children sick, their parents desperate and tearing families apart.
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