A letter to... My brave boy
Dear Alfie,
You were having 500 lifethreatening seizures a month
You were just 8 months old in May 2012 when I woke up to the sound of you screaming. As I turned on the light, I saw your arms and legs kicking, your face blue.
‘Drew!’ I screamed, calling for your daddy, then 34.
We felt helpless as we raced you over to Warwick Hospital.
At first, doctors thought it was a febrile seizure – a convulsion often caused by infection.
But then you had another one.
And every 15-30 minutes, it’d happen again.
‘He definitely has a form of epilepsy,’ doctors told us then.
But you weren’t responding to any medication.
Eventually, you were transferred to Great Ormond Street Hospital, where they started treating you with steroids.
Gradually, you responded.
In August 2012, we came home.
We thought the worst was over.
But just after you turned 1, the seizures came back worse than ever.
Doctors diagnosed you with a rare type of cluster epilepsy.
By the time your younger sister Annie was born in August 2014, you were having 500 life-threatening seizures a month. Practically living at the hospital, I feared you’d never get better. Throwing myself into research, I was determined to help ease your pain.
And, to my surprise, there was one thing that kept cropping up. Cannabis. Initially, I dismissed it, assumed it was just a drug people used to get high.
But when I learned more about its healing properties and spoke to other families using it, I wondered if it could help you.
Speaking to doctors, I tried my best to get you on a medical trial for CBD – the active ingredient derived from cannabis.
But it was no use. So… ‘We’re moving to Holland!’ I told you excitedly. It was legal there, no need for a trial.
Raising the £25,000 needed for the trip and your treatment, we packed our bags and uprooted to Holland in September 2017.
It was worth every penny.
See, during our five months there, you went 17, then 41 days without having a single seizure.
That money didn’t last forever, though.
Moving home in February 2018, we had no choice but to leave your magic medicine behind.
But seeing how it’d helped you, we couldn’t give up, I had to campaign for you to use it in the UK.
Creating petitions, lobbying MPs, we even met the prime minister. And eventually, in June 2018, you became the first person in the UK to have a permanent medical cannabis licence. The change in you is amazing.
After using cannabis for almost two years, you have, at most, four seizures a month.
You have a better life, we all do.
But there are 20,000 children in the UK with rare forms of epilepsy like yours.
All of them should be given the chance to thrive.
And that’s something I’ll always keep fighting for.
Love, Mum xxx Hannah Deacon, 40, Kenilworth, Warwickshire
Hannah has co-founded a company, Maple Tree, with one of Alfie’s doctors, which supports medicalcannabis companies in the UK with strategic advice. For more information and advice, visit mapletreeconsultants. co.uk/