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Feature Patient Commentary

Why I campaign for children like my son Alfie Dingley to be able to get medical cannabis

BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l1921 (Published 01 May 2019) Cite this as: BMJ 2019;365:l1921

Linked Essay

Why medical cannabis is still out of patients’ reach—an essay by David Nutt

  1. Hannah Deacon, mother of patient Alfie Dingley
  1. Kenilworth, Warwickshire
  1. deaconhannah4{at}googlemail.com

The high profile case of Alfie Dingley’s intractable epilepsy was key to last year’s law change. His mother, Hannah Deacon, explains why she now campaigns for the many families still fighting for access

My son Alfie, born in 2011, was perfect until he was 4 months old, when he became constantly sick. At 8 months he had his first tonic clonic seizure. He continued to have seizures in hospital for nearly four months. Intravenous steroids eventually stopped this cluster of seizures.

He lost every skill he’d developed, and he was diagnosed as having autoimmune epilepsy. Alfie had clusters of seizures every eight months until he was 4 years old. Then the clusters occurred every three weeks, and by the time he was 5 they came every week. Each time he needed up to five doses of intravenous steroids.

Then, Alfie was diagnosed with a rare epilepsy syndrome caused by a mutation in the gene that codes for the protein protocadherin 19. We were told that he might get better with age, but as far as we could see his health was getting worse. Only nine known boys worldwide have PCDH19 epilepsy, so prognosis was impossible.

Treatments that worked

I …

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