An 11-year-old boy suffered 500 seizures a month before becoming the first person to be prescribed the Class B drug by the NHS.
Mum-of-two Hannah Deacon, 43, from Kenilworth, won her NHS battle for a prescription for medicinal 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 a prescription after the law was changed to allow unlicensed prescription of cannabis-based medicines in certain circumstances.
Four years later, Hannah describes how her family has “a better life” after 11-year-old Alfie Dingley’s health improved with the drug.
When Alfie was eight months old, he had his first epileptic seizure.
Hannah Deacon (43) (right) said her family’s life had changed for the better since her son Alfie (11) (centre) was prescribed medicinal cannabis by the NHS for his epilepsy
In 2018, Hannah called for changes to the laws governing the prescription of the drug
The family was at their wits’ end when doctors couldn’t figure out what caused his seizures, which led to him being hospitalized around 50 times a year.
At the age of five, Alfie was diagnosed with PCDH19 – a severe refractory epilepsy disorder. Hannah said: “We were told by our neurologist at the time that he might get better as he got older and that there was nothing else we could do.”
As the years and his condition progressed, he suffered up to 500 violent attacks a month.
Hannah explained that hospitals would treat him with steroids and anticonvulsants to control his condition, but they would only control his seizures for a short time and give him “severe side effects.”
She said: “He always had hundreds of seizures or was at home with me as his full-time carer. He punched me, pushed and kicked me, screamed, didn’t sleep – there was just no quality of life for him.”
“At the time I just thought, no, I don’t accept it, I don’t accept it, I just hope for the best and hope he doesn’t die.
The 43-year-old added: “As a mother, I had to know that I would do anything to give him a better life, and that’s why I turned to Google.”
In 2017, after doing extensive research and talking to other parents of epileptic children, Hannah raised funds to travel to the Netherlands, where medical cannabis oil is legal, so her son could benefit from the controversial treatment.
Before his treatment, he had 500 seizures a month. In the photo: Alfie and his younger sister Annie Dingley (8).
At the age of five, Alfie was diagnosed with PCDH19 – a severe refractory epilepsy disorder
Hannah said she saw an immediate improvement in Alfie – he reduced his 30 attacks a day to one a month.
But when he was forced to return home and stop using cannabis oil, Alfie’s condition immediately deteriorated, prompting his mother’s tireless campaign to get medicinal cannabis prescribed by the NHS.
In 2018, Alfie became the first person to receive an NHS day nabis prescription. He recently celebrated being seizure free for two and a half years since being prescribed medicinal marijuana.
The mum-of-two explained how her family’s life has changed for the better, saying: “Since he’s been on this drug, he’s been going to school every day, studying, building relationships with his peers. I get regular updates from the school about how impressed they are.
“His life is generally very normal and that’s all we wished for as parents.”
Along with the improvement in Alfie’s daily life, Hannah’s life also changed dramatically. She explained: “It has enabled me to go back to work, pay my taxes and become someone in society that I want to be.
Alfie recently celebrated two and a half years without seizures since she was prescribed the drug
Since the campaign was successful, Alfie has led a normal and happy life
“Something that is also very close to my heart is helping him, but also helping me to have a better life for my family and this drug has done that.”
Since returning to work, she has earned the role of Executive Director of the Medical Cannabis Clinicians Society and works in the medical marijuana sector where she continues to advocate for the use of the drug.
She added: “When you have a child with a disability you don’t have a normality in our lives – 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 couldn’t go out and do fun things together.’
Both Hannah and her husband, Drew Dingley (44), are now able to nurture friendships they never had the opportunity to.
She said: “I think society looks at the foster parents and thinks, ‘It’s your job, you’re a mother,’ but actually, when we have children, none of us are going to think that we’re going to have them.” a disabled child.
“I feel very lucky now to be in a position where my son is doing well and I can be the person in society that I want to be.”
Hannah said Alfie’s medicine “gave her family a better life.” Pictured left to right: Hannah Deacon, Alfie Dingley, Drew Dingley and Annie Dingley
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
