Cannabis saved my son's life
I used to dream of being a normal mother. I would see other mums dropping their kids off at school, waving them goodbye and I’d want to be them. Not the parent with a chronically ill child.
For years, this scenario felt unattainable, but since my son Alfie Dingley became the first patient in the UK to receive a permanent cannabis licence, our family has been given hope.
There’s a lot of fear around the word ‘cannabis’. But for Alfie and my family, it changed our lives.
When he was five years old, my son was diagnosed with a rare form of epilepsy, called PCDH19, which caused up to 150 seizures a month.
Alfie was just eight months old when we first took him to hospital following a terrifying series of seizures at our home one night in 2012. He was admitted for nearly four months and was having chronic seizures every 15 minutes to half an hour, which could last up to five minutes. It was incredibly frightening.
He ended up being transferred on a life support machine into the Intensive Care Unit, before being taken to Great Ormond Street Hospital. Due to the severity of the seizures, it meant Alfie lost a lot of skills and was like a newborn again.
Up until that point our son had been following the key developmental lines quite normally, such as sitting up and swallowing, but his condition took all that away.
At that time, the trauma that we all went through – especially Alfie – was very distressing. He would be in hospital, pumped full of drugs and then would come home and act really aggressively.
He would lash out, scratch, kick and punch, due to the severe side effects of hundreds of seizures and the heavy drugs that were being used to stop the clusters.
Even so, he would still get severe clusters every eight months until he was four, then they began to come every three weeks. By the time he was five, Alfie was having bouts of seizures every week. As a family, we were simply surviving and had no quality of life.
My partner is over 6ft and plays rugby, and I knew that when Alfie got to that size I wouldn’t be able to look after him anymore. I was worried about what our future might look like, especially when he got too big for me to handle.
In 2017, after fundraising enough money, we travelled to the Netherlands for medical cannabis treatment, something that I’d researched and learned could help lessen his seizures’ frequency and intensity.
After six weeks of the treatment, administered as an oil under the tongue, Alfie went 17 days without any seizures.
We continued to increase the dose of the medical cannabis and after five months, my son went 41 days with no seizures. Before we went to Holland, he was in hospital every week having hundreds of seizures. Now he was having fewer and needed much fewer pharmaceutical drugs.
He was also learning new skills and his cognitive development notably improved. But after five months, we ran out of money so came home to fight our cause in the UK.
What followed was several months of campaigning, petitioning the government to get Alfie a permanent medical cannabis licence.
Eventually, in 2018, he was given one.
Finally, Alfie was able to get a little bit of his quality of life back. He received his medication on the NHS and went 11 months with no seizures – the longest amount of time since his diagnosis. It was amazing and felt like we were finally getting to really know our child. His quality of life hugely improved and we only saw benefits for him. It changed the whole family once he had his medicine.
Although we have been lucky, so many other parents with chronically ill children are being failed. Access to medical cannabis is still difficult to obtain and families are not being supported the way they need – and deserve – to be.
I have spoken with parents of children with chronic illness who say they are not offered counselling or family support. Families with kids who have disabilities don’t choose to be in this situation. It is forced on us and we are being consistently failed through a deficit of support, not enough social workers and a lack of respite care.
This is why I keep campaigning for easier access to medicinal cannabis, because I think it should be available to people with epilepsy and all patients with chronic illness. Not only does it ease their pain, but it keeps them out of hospital – thereby saving the NHS money.
I don’t want other parents to go through all that we have been through. I still feel a huge amount of grief about the fact that my child is ill. I don’t know if he will live longer than me and, if he does, who will look after him when he gets older?
I also worry about the effect all this has on my five-year-old daughter. She needs her mummy and I’m conscious of the impact this could have on her as a child – having a brother with epilepsy.
But I manage this by remembering how far we have come with Alfie.
Although we can still have bad days, it’s nothing like we experienced before his treatment. And I use this time to help others who are going through what we did.
If Alfie’s legacy is that he helped me to support other people and that his name will be remembered because the law was changed in the UK, what a wonderful legacy that will be. It’s turned a lot of grief into something positive.
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