An 11-year-old boy used to suffer from 500 seizures a month before he became the first first person to get the Class B drug prescribed on the NHS.
Mother-of-two Hannah Deacon, 43, from Kenilworth won her fight for the NHS to prescribe medical cannabis after seeing how well it improved her son’s epilepsy symptoms.
In November 2018, Alfie Dingley, now 11, became the first person to receive the prescription after the law changed to allow the prescribing of unlicensed cannabis based medicinal products in certain circumstances.
Four years later, Hannah details how her family has ‘a better life’ now that 11-year-old Alfie Dingley’s health has improved as a result of the drug.
At eight months old Alfie suffered from his first epileptic seizure.
Hannah Deacon, 43, (right) said her family’s lives have changed for the better since her son, Alfie, 11, (centre) was prescribed medical cannabis on the NHS for his epilepsy
In 2018, Hannah campaigned to have the laws around prescribing the medicinal drug changed
The family found themselves at loss as doctors could not detect what was causing his seizures – which were putting him in hospital around 50 times a year.
At the age of five, Alfie was diagnosed with PCDH19 – a severe refractory epilepsy condition. Hannah said: ‘We were told by our then neurologist that he may get better with age and there’s nothing else we can do.’
As the years and his condition progressed, he began having up to 500 violent seizures a month.
Hannah explained to manage his condition hospitals would treat him with steroids and antiepileptics, but they would only keep his seizures at bay for a short while and give him ‘severe side effects’.
She said: ‘He was always either having hundreds of seizures or was at home with me as his full-time carer. He was hitting, punching and kicking me, screaming, not sleeping – there was just no quality of life for him.’
‘I just thought at that point well no, I’m not going to accept that, I’m not going to accept that I just hope for the best and hope he doesn’t die.
The 43-year-old added: ‘I needed to know as a mother that I did everything in my power to give him a better life and that’s why I went to Google.’
After thorough research and speaking to other parents with epileptic children, Hannah raised funds to travel to the Netherlands in 2017, where medical cannabis oil is legal, so that her son could benefit from the controversial treatment.
Before his treatment, he was suffering from 500 seizures a month. Pictured: Alfie and his younger sister, Annie Dingley, 8
At the age of five, Alfie was diagnosed with PCDH19 – a severe refractory epilepsy condition
Hannah said she saw an immediate improvement in Alfie – reducing his 30 seizures a day down to one a month.
But when forced to return home and come off cannabis oil, Alfie’s condition immediately deteriorated, which was the motivation for his mother’s tireless campaign to get medicinal cannabis prescribed on the NHS.
In 2018, Alfie became the first person to receive an NHS prescription for cannabis. He has recently celebrated two and a half years seizure free since being prescribed medicinal cannabis.
Explaining how her family’s life has changed for the better, the mother-of-two said: ‘Since he’s been on this medicine, he is going to school every day, he’s learning, he’s creating relationships with his peers. I get regular updates from the school with how impressed they are.
‘On the whole his life is very normal which is all we’ve ever wanted as parents.’
As well as improving Alfie’s day-to-day life, Hannah’s has changed drastically too. She explained: ‘It has enabled me to get back to work, to pay my tax, to become someone in society that I want to be.
Alfie has recently celebrated two and a half years seizure free since being prescribed the drug
Since the campaign proved to be a success, Alfie has been living a normal and happy life
‘Something that is also very close to my heart is helping him, but also to help me have a better life for my family and this medicine has done that.’
Since returning to work, she has earned the role as the Executive Director of The Medical Cannabis Clinicians Society and works within the medicinal cannabis sector where she continues to campaign for the use of the drug.
She added: ‘When you have a child with a disability you have no normality in our life – especially a chronic disability like Alfie where he’s in hospital all the time.
‘My partner and I had no normality in our lives. We weren’t able to go out and do nice things together.’
Both Hannah and her husband, Drew Dingley, 44, are now able to nurture friendships when they did not previously have the opportunity to.
She said: ‘I think society looks at parent carers and thinks “that’s your job, you’re a mother”, but actually none of us go into having children thinking we’ll have a disabled child.
‘I now feel very lucky to be in a position where my son is well and I’m able to be the person in society I want to be.’
Hannah said that Alfie’s medicine has provided ‘a better life for her family’. Pictured left to right: Hannah Deacon, Alfie Dingley, Drew Dingley, and Annie Dingley