News, views and top stories in your inbox. Don't miss our must-read newsletter Sign up Thank you for subscribing We have more newsletters Show me See our privacy notice Invalid Email

Grinning from ear to ear with his endearing gappy smile as Santa hands him a present, Alfie Dingley is thrilled to bits.

Like most children, the seven-year-old has been looking forward to meeting Father Christmas.

But, unlike most youngsters his age, Alfie has only just un­­der­stood who Santa is.

So, for the first time since he was born with a rare form of epilepsy – and thanks to a landmark drugs ruling – his family can at last celebrate the festive season properly.

Alfie has a disorder called PCDH19. There are only nine known cases among boys world wide.

It causes clusters of life-threatening seizures – up to 150 a month in Alfie’s case – in addition to learning difficulties, com­­­­pulsive disorders and autism.

(Image: Rowan Griffiths/Daily Mirror)

The only thing which gave the family any respite from the relentless night terrors, ambulance call outs and uncontrollable violent outbursts, as well as the seizures, was cannabis oil. To access it they had to move to Holland.

But after Alfie was granted a special licence to use the substance in June, his mum Hannah Deacon became the first person to legally enter Britain with cannabis oil.

Alfie can now finally live life to the full. He hasn’t had a seizure since, meaning his ability to learn has soared.

Hannah, 39, says: “For the first time ever, he knows about Father Christmas.

“He said to me the other morning: ‘Mummy, I just want Father Christmas to bring me an umbrella.’

“I had to do a double take. For the first time, he just gets stuff. Every day, it’s like something is clicking in his head, like his brain is opening up and saying ‘Hello world’.”

(Image: SWNS.com)

Before the licence was granted by the Home Office, Hannah was near to breaking, some days feeling she couldn’t live any more.

She remembers sobbing as she saw parents walk their children to school.

She tells me: “I was grieving for my little boy, thinking ‘This isn’t what was supposed to happen.’”

Before the cannabis oil, Alfie had intravenous steroids which had extreme side effects.

Says Hannah: “He could be very violent. He punched me and scratched me in the face. It was horrendous.

“I gave up work as a hairdresser and felt extremely isolated.

“You cannot take your child into an ambulance every week in a life-threatening condition for nearly two and a half years without it seriously messing with your head.

“If we had carried on with the steroids they would have killed him. I was very, very low. I thought ‘I just don’t want to live.’ So I decided to do ­something about it.”

(Image: SWNS.com)

After engaging with an online community of parents in ­similarly unbearable situations, Hannah and Alfie’s dad Drew, 40, decided to move to Holland, where medical cannabis is legal.

Hannah explains: “We tried everything, in­­­cluding varieties of cannabinoids which are legal such as hemp oil. Nothing was strong enough.”

The family even handed a petition to 10 Downing Street, supported by actor Sir Patrick Stewart, calling for medicinal cannabis to be legalised.

The Dingleys uprooted from ­Kenil­­worth, Warks, to The Hague in a desperate bid to see if the drug could provide a lifeline for Alfie.

For those first few days he was still having seizures and Hannah remembers when she pulled up at the side of the road, shouting out to the world, begging for the oil to work.

And it did. Within a week, Alfie improved and within three months he only had a seizure every few weeks.

After first being refused permission, the family’s special licence was issued in June and a month later Home Secretary Sajid Javid announced plans to let spec­­ialist doctors prescribe can­­nabis-derived products for ­“exceptional clinical need”.

(Image: Rowan Griffiths/Daily Mirror)

As I sit with Alfie in the family living room in the Midlands, Hannah says he is a different child to a year ago.

He remembers the family’s shopping list and my name throughout the visit, at one stage ushering me out hand-in-hand to show me a favourite book – Dear Zoo.

And the joyful visit to see Santa at the Wyevale Garden Centre Christmas grotto in Frankton was another ­landmark. Hannah stresses: “He still has learning and speech difficulties. He still has a disorder, this is not a cure.”

She shows me his prescription – two tiny bottles of oil.

Alfie has 3ml of ­full-extract ­cannabinoid (CBD) a day and 3ml of tetrahydrocannabinol (THC).

“Now he has no seizures, goes to school every day and has learnt to ride a bike and a horse.

“I would say he is 90% normal,” says Hannah.

After completing just three weeks of school in reception year, Alfie is still behind but his confidence is improving.

Hannah adds: “What is important is that he is in a ­mainstream school. He is actually a really bright little boy.”

But the fight for Hannah, also mum to Annie, four, is not over.

She worries Alfie’s seizures may return – and that when the ­temporary licence runs out they could be back to square one.

And she still suffers emotionally from his past episodes. “Some mornings it takes me half an hour to get him dressed as he still has learning difficulties,” she says.

But Hannah is helped through hard times by her desire to support families in similar, or worse, situations.

She has launched a petition – it already has 467,000 signatures – to amend advice from the Royal College of Physicians and the British Paediatric Neurology Association given when the legislation came in.

It says the oil is not ­recommended as there is “no quality evidence” it is safe and effective for pain relief. Hannah calls the report “shattering”.

But she adds: “We are looking forward with optimism.

“Alfie is stage manager of his Christmas play and Annie plays a star. I am going to cry my eyes out.

“We are going to be a normal family this Christmas. That’s so special.”