Mrs May looked me in the eye and promised to help us. But I had to shame her into giving me Alfie’s ‘miracle oil’
epileptic seizure when he was eight months old. ‘I remember it clear as day – May 27, 2012. That date is etched on my brain for ever,’ says Hannah.
‘I was woken up at midnight when he let out a massive scream. I went in and looked down at him in his cot and he was just having this huge seizure. It was terrifying, the stuff of nightmares.
‘His whole body was shaking, eyes in the back of his head, frothing at the mouth.’
Alfie was rushed to hospital but the fits continued and, as medics desperately tried one anti-epilepsy drug after another, doctors warned Hannah and her husband, Drew, that the little boy may not survive.
But after three months in intensive care, neurologists at Great Ormond Street Hospital found an intravenous steroid that made the seizures less frequent.
Alfie, one of only nine boys in the UK diagnosed with a condition called PCDH19, was allowed home, but would suffer clusters of up to 150 severe fits over the course of 72 to 96 hours about every eight months.
By the time he was four, those clusters were coming almost weekly.
In desperation, Hannah began to research alternative treatments. After a particularly severe seizure, she found a Dutch neurologist willing to treat Alfie with cannabis oil medication, including one that contains THC – the main psychoactive ingredient in cannabis which is illegal in the UK – and the family moved to Holland in September 2017.
The family say the improvement was dramatic, the number of seizures falling to one or two every five weeks. ‘Alfie was able to go to the beach to play football and ride his bike,’ says Drew.
However, the family soon ran up costs of £30,000 and were forced to return to their home in Kenilworth, Warwickshire, in February, hoping that a four-month supply of legal cannabis oil that does not contain THC would last until they got approval for a version containing THC to be prescribed by the NHS.
After enlisting the support of their local MP Jeremy Wright – the current Attorney General – and End Our Pain, a group campaigning for the legalisation of medical cannabis, Hannah secured a meeting with Mr Hurd.
The family’s luck changed when they delivered a petition to No 10 on March 20 and the Minister invited them inside.
‘We went into a room, sat down and had tea,’ Hannah says. ‘Then the door opens and Theresa May walks in. She said, “I’ve been told about you and I wanted to come and say hello.”
‘She said hello to Alfie, who was climbing all over the sofas, and then said, “I can confirm to you we will help. My Ministers will help you go through a compassionate process. We’ll do it as speedily as we can and we do want Alfie to have the medication he needs.”
‘I thought she seemed sympathetic and sincere. I walked out of there thinking this is going to happen, we’re going to have our medicine in a month’s time.’ Hannah assembled a team of doctors and political experts to help her with the licence application but says she was met with continued delays from the Home Office.
Last Saturday, as news broke that Billy Caldwell was to be allowed to take cannabis oil, her patience snapped.
‘I got on the phone to Nick Hurd and I cried my eyes out,’ she recalls. ‘I said, “I’m really angry and upset because you all promised me you’d do this for me and my little boy.”
‘He assured me that the licence was an emergency measure for Billy and I would be the first person in this country to have a long-term licence for an NHS prescription for medical cannabis.’
The Minister promised Hannah that he would review the case, but she sent him an email ultimatum – grant the licence or face the consequences.
‘The Home Office didn’t take us seriously and it led to their own downfall,’ she says. ‘I hope they learn a big lesson from it.
‘I wouldn’t want anyone to go through what we’ve had to go through, but I’m so proud that hopefully they won’t have to now.’