An 11-year-old boy suffered 500 seizures a month before becoming the first person prescribed the class B drug by the NHS.
Mother-of-two Hannah Deacon, 43, from Kenilworth won her NHS battle 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 was amended to allow the unlicensed prescription of cannabis-based medicinal products in certain circumstances.
Four years later, Hannah describes how her family has “a better life” now that 11-year-old Alfie Dingley’s health has improved as a result of the drug.
When Alfie was eight months old, he had his first epileptic seizure.
Hannah Deacon, 43, (right) said her family’s life has changed for the better since her son, Alfie, 11, (centre) was prescribed medicinal cannabis by the NHS for his epilepsy
In 2018, Hannah campaigned to change the laws surrounding the drug’s prescription
The family was at their wits’ end as the doctors could not discover what caused his seizures, which resulted in him being hospitalized about 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 gets older and there’s nothing else we can do.’
As the years and his condition progressed, he suffered up to 500 violent seizures a month.
Hannah explained that hospitals would treat him with steroids and anticonvulsants to manage his condition, but they would only control his seizures for a short time and give him “serious side effects.”
She said, “He was always having hundreds of seizures or was at home with me as his full-time caregiver. He punched, punched and kicked me, screamed, didn’t sleep – there was just no quality of life for him.”
“I just thought at the time no, I don’t accept that, I don’t 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 was doing everything I could to give him a better life and that’s why I turned to Google.”
After thorough research and conversations with other parents with epileptic children, Hannah raised funds to travel to the Netherlands in 2017, where medicinal cannabis oil is legal, so that her son could benefit from the controversial treatment.
Before his treatment, he had 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 disorder
Hannah said she saw an immediate improvement in Alfie – reducing his 30 seizures a day to one a month.
But when he was forced to return home and go off the cannabis oil, Alfie’s condition immediately deteriorated, prompting his mother’s tireless campaign to get medical cannabis prescribed on the NHS.
In 2018, Alfie became the first person to receive an NHS cannabis prescription. He recently celebrated being seizure-free for two and a half years since being prescribed medicinal cannabis.
The mother-of-two explained how her family’s life has changed for the better, saying, “Since taking this drug, he goes to school every day, learns, builds relationships with his peers. I get regular updates from the school on how impressed they are.
“Overall, his life is very normal and that’s all we’ve ever wanted as parents.”
In addition to improving Alfie’s daily life, Hannah’s has also changed dramatically. She explained, “It has enabled me to go back to work, to pay my taxes, to become someone in society that I want to be.
Alfie recently celebrated two and a half years seizure free since she was prescribed the drug
Since the campaign turned out to be a success, Alfie has been leading a normal and happy life
“Something that is also very close to my heart is helping him, but also helping me have a better life for my family and this medicine has done that.”
Since returning to work, she has earned the role of executive director of The Medical Cannabis Clinicians Society and is working in the medical 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 lives – especially a chronic disability like Alfie, where he’s in the hospital all the time.
‘My partner and I had no normalcy 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 didn’t have the chance to before.
She said: ‘I think society looks at parent caregivers and thinks ‘that’s your job, you’re a mother’, but actually none of us when we have children are going to think we’re going to have a disabled child.
“I feel very fortunate now to be in a position where my son is well off and I’m able to be the person in society that I want to be.”
Hannah said Alfie’s medicine “has given her family a better life.” Pictured from left to right: Hannah Deacon, Alfie Dingley, Drew Dingley and Annie Dingley
