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Fallon's Family Story

Graham Levy and Elaine Gennard

 

September 5th 1998 was Fallon's first day of school. She was 4 and a half years old.

 

Up to that point Fallon's development had been quite normal, and she had hit all her normal childhood targets…. Even though she was always a quiet little girl.

 

The day ended with any families worst nightmare, with Fallon in Great Ormond Street Hospital, after being taken in with severe and uncontrolled seizures.

 

It wasn’t for another 20 years that we had our breakthrough. These 20 years were filled with anguish and heartache for the family, as Fallon tried a series of pharmaceutical anti-epileptic drugs …… none of which worked, as she suffered over 200 seizures per month of various descriptions. Fallon was diagnosed as an LGS sufferer.

 

Early in 2018 we had a breakthrough. Hannah Deacon was on TV talking about her son Alfie, how she had lived in Holland giving him Medicinal Cannabis. At that point it was illegal in the UK having been included in a catch-all ban that stopped even research being done. Alfie was granted a special licence, one of only 3 given to the present day.

 

It seemed like a miracle.

 

We took her to Holland and met a doctor willing to prescribe. It was the miracle we hoped for and Fallons seizures fell from over 200 a month to 20 a month …..a 90% drop.

 

The only problem was the £2,000 a month cost and a flight to Amsterdam once a month to pick up the prescription.

 

November 2018 Sajid Javid legalised Medicinal Cannabis.

 

August 2022 the NHS still refuse to allow prescriptions

 

Families are still paying £2,000 a month. To contextualised that is the full take home pay for a job paying £30,000 a year.

Elaine on Sky News 6th February 2020

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