Alfie Dingley had his first epileptic fit when he was just eight months old. He was put on various anti-epileptic medications but nothing worked.
Since then, his condition deteriorated and he typically had 150 seizures a week. A brutal attack would last up to 25 minutes.
In the UK there are around 1,200 deaths related to epilepsy a year – and his mother Hannah Deacon feared her young son may become one of those statistics.
Alfie, now six, had been pumped with steroids his whole life that were making him aggressive and he would often hit his sister, Annie, three. His family feared she may have come to serious harm by the time he reached adult size.
Previously he was in hospital every week. Now he hasn’t set foot in a hospital since June and he’s had no time off school
Desperate to save him before he suffered lasting brain damage, last year they moved to Holland for five months so he could be prescribed medical cannabis, where it is legal. After six weeks the boy’s condition dramatically improved.
But it wasn’t legal in the UK and she began her high-profile campaign to battle for her child to be access it on the NHS – and in June a special licence was granted and she became the first person to legally enter UK with cannabis oil.
Now she has revealed Alfie has now been seizure-free since then and is even learning to ride a bike.
“Alfie has a normal life now,” she told i. “Previously his epilepsy was so uncontrolled that he attended just three weeks of school in reception year and he was in hospital every week. Now he hasn’t set foot in a hospital since June and he’s had no time off school.
“The steroid could lead to psychosis. My son is proof medicinal cannabis works.”
Too hard to get help
A couple of months ago, the Home Office announced that doctors will be able to legally prescribe medicinal cannabis to patients in the UK from the autumn. In the meantime, an expert panel was set up in June to review such cases which have to be deemed ‘exceptional’.
It followed an outcry surrounding the case of Billy Caldwell, a 13-year-old with severe epilepsy, after his cannabis oil was seized at Heathrow Airport.
However, families are angry about the panel’s requirements and complain that they are finding it too hard to get help.
So far, Alfie, Billy and a seven-year-old called Sophia Gibson are the only children who have been granted permission.
Ilmarie Braun has pleaded for help after her severely epileptic three-year-old son Eddie’s was refused medical cannabis to try to stop his 120 seizures a day.
Hannah, who has lead the campaign group End Our Pain, is now fighting for 16 families who have not been allowed to apply for a licence as they do not have their doctor’s backing.
She said the process set up by the panel to review cases is deeply flawed. She said it’s unfair that patients have to have tried medicinal cannabis abroad.
“Not every family can afford to have travelled abroad and sometimes the children are just too poorly to go,” she said.
‘Medical cannabis is not accessible in reality’
The mother of a severely epileptic three-year-old boy who has up to 120 seizures a day has accused the Government of failing him after he was refused the right to use medical cannabis.
Ilmarie Braun says the expert Government panel set up to grant licence applications is just “paying lip service” to the families of seriously ill children.
She and her husband Alex say cannabis oil bought over the counter has reduced their son Eddie’s seizures from around 500 a day to 120. However, they say the effect of the product they are currently using has plateaued and they are desperate to try a higher strength version to prevent further brain damage – before it is too late.
She told i: “We are disappointed, drained and tired. It’s been made out that medicinal cannabis will be more accessible than it is in reality. The Government are paying lip service. “Eddie cannot walk, talk or sit up independently and will suffer more brain damage if we can’t get his epilepsy better under control. We are desperate to give him a fighting chance.”
Medicinal cannabis may not work for everyone, but these parents with seriously ill children have a right to try what could save their children
Hannah also said it is also problematic that they will only grant a cannabis licence as a last resort once the patient has tried all alternative drugs available.
“There are around 20 different anti-epileptic drugs, and it’s being taken as red that they have to have tried every one. But once you’ve tried four or five and they’re not working the chance of the others working is around five per cent.”
Hannah also criticised the Government for not providing doctors with enough education on the issue.
“There is a big whole in the understanding in the medical profession. I probably know more about medicinal cannabis than 95 per cent of the doctors in this country and that is wrong.
“Medicinal cannabis may not work for everyone, but these parents with seriously ill children have a right to try what could save their children.”
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