An epileptic boy whose plight triggered the medicinal cannabis review now attends school every day and can even ride a bike due to the Cannabis oil.
Alfie Dingley, a seven year old kid from Kenilworth, had his first seizure at just 8months old and went on to have thousands more, some as often as every 30 minutes.
Unsure how best to treat Alfie dingley, his doctor pumped him with steroids that left him “High as Kite”. That later even caused him to suffer many psychotic episodes.
After being told the medication itself could kill Alfie Dingley or result in him being sectioned, the Alife’s family moved to the Netherlands so Alfie could take part in a cannabis oil trial.
Alfie dingley’s seizure stopped after 5 weeks his mood improved and his cognitive abilities started to catch up.
Alfie’s condition immediately deteriorated when he forced to return home and come off cannabis oil, which led to Home Secretary Sajid Javid issuing a special license for Alfie dingley to be allowed the treatment.
With Cannabis oil being available on NHS Prescription from November 1, Alfie dingley’s mother Hannah Deacon said it has been a miracle for her son.
Hannah Deacon said, “Today, Alfie is a happy and cheeky boy. He loves riding his bike and all of his cognitive development issues are much easier to deal with now,”
Speaking of how their ordeal began, Hannah Deacon said to Daily Mail, “Alfie was eight months old when I heard him scream from his cot and ran up to find he was having his first catastrophic seizure”.
“He went on to have cluster seizures every half hour for three and a half weeks and ended up on life support at Great Ormond Street Hospital because he was so seriously ill and they didn’t know if he’d make it”.
“Even though he’s gone onto have thousands more seizures since, I still cry every time I see it because it’s horrendous to see someone you love having a seizure”.
“It turns out he has a very rare form of epilepsy which only affects nine boys in the world”.
Mrs Deacon, who is married to landscaper and builder Drew, added: “It’s not genetic, it’s just something that’s happened spontaneously for him and we don’t know the reason why”.
“That means we don’t know his prognosis or how it’s likely to progress”.
With his treatment options being limited, Alfie’s doctor prescribed him strong doses of intravenous steroids
“They made him aggressive and violent, causing him to hit his sister Annie because he was high as a kite on drugs all the time,” Mrs Deacon said.
“He was always hungry and his face was puffy”.
“We dealt with him like [that] up until we saw a neurologist, who told us if we carried on like that Alfie would die or the drugs would make him psychotic and that he’d have to be sectioned”.
“That was not acceptable.”
Desperate, Mrs Deacon took it upon herself to research alternative treatment options and came across cannabis oil.
After nine months of research, including talking to families who had benefited from the oil, Mr Deacon spoke to her son’s neurologist.
“His words to me were “you don’t have a choice” meaning we had to try to get it for Alfie,” she said.
“I will be forever grateful to him for supporting us with that.”
In 2017, when Alfie was just five years old, the family moved to the Netherlands so he could take part in a cannabis oil trial.
“Before we went we got the blessing of Alfie’s paediatrician and our local MP as we wanted to do everything openly,” Mrs Deacon said.
“We’re aware that some people don’t do that but we felt we shouldn’t have to break the law to keep our son alive.”
“The doctors in the Netherlands started treating him with cannabis oil, which is administered as an oil under his tongue that is then absorbed by his bloodstream.”
“He didn’t respond to start with as it takes time for the cannabis oil to build up in the body. I was extremely worried that it wasn’t going to work.”
But just five weeks into the treatment, Alfie’s family began to notice a remarkable change.
“He stopped having seizures. He became happier. And his cognitive development started to improve,” Mrs Deacon said.
“He has learning and speech delay, and had regressed as a result of his epilepsy and the steroids, and only managing to do three weeks at school.”
“Cannabis oil has been a miracle for Alfie.”
After five months of treatment in the Netherlands, Alfie’s family felt they had all the evidence they needed to campaign for medicinal cannabis oil to be made legal in the UK.
“We returned and obviously had to take Alfie off cannabis oil. He became very unwell again,” she said.
“A lot of people got in touch via our Facebook page Alfie’s Hope – and those messages kept me going.”
“Our MP arranged a meeting with the Home Office in the March and we took a petition bearing 370,000 signatures to Downing Street where we met the Prime Minister Theresa May.”
“We told her about Alfie and she said she would do all she could to help. We were pleased.”
Although backed by a lot of support, the family still faced challenges getting their voice heard.
“But then it seemed like we were faced with a pharmaceutical trial application – we weren’t a big national drugs company we were just a family with a small child who desperately needed medication,” Mrs Deacon said.
“It became apparent by June that we weren’t getting anywhere so I did an interview on Radio 4 where I talked about my meeting with Theresa May and how I felt I’d been let down.”
“Soon after, home secretary Sajid Javid got in touch to say they were issuing Alfie with a licence and reviewing cannabis as a medication.”
“We were delighted. Our doctor is now free to prescribe this medication for our son without worry of his career or any of his colleagues saying that he shouldn’t.”
“And, as soon as Alfie had cannabis oil back in his system, he started to do really well again.”
With his epilepsy now under control, Alfie can even ride a bike.
“It’s absolutely amazing that he can do that,” Mrs Deacon said.
“We had tried to help him learn to ride his bike but he just sat there and pedalled backwards which is sad because every little boy should be able to ride a bike.”
“He’s now learnt how to ride a bike, which has been brilliant.”
“His sister Annie is four now and has started school. His condition is not impacting on her now the way it was.”
Mrs Deacon is speaking out ahead of an Epilepsy Action event on Thursday to raise awareness of the benefits of medicinal cannabis oil.
“Cannabis oil will be prescribable from November 1 2018,” she said.
“However, a lot more needs to be done so that doctors understand the medical uses of it.”
“I feel people should have the right to use it but some doctors don’t feel it’s safe because it’s not been tested in the same way as other drugs.”
“But it’s probably one of the safest medicines you can use.
“We produce cannabinoids in our bodies and this is the closest thing to our own make up.”
The body’s cannabinoid receptors are part of the endocannabinoid system, which is involved in physiological processes including appetite, pain-sensation, mood and memory.
“Cannabis oil can be used for so many illnesses,” Mrs Deacon added.
“Doctors are used to having just one drug for one use but if your body is depleted in cannabinoids then cannabis oil can help the body neurologically with conditions like MS and Parkinson’s.”
“It can also help the auto-immune system and it’s amazing for helping with pain relief, especially in conditions such as arthritis.”
“It’s good for lots of different symptoms so I believe it could help lots of people.”
“It makes me very upset because it is could be so simple. But we’re fighting 50 years of people believing cannabis is bad.”
“We need to talk about it medically not recreationally. We need to raise awareness of it.” She added in the daily mail.