Teagan Appleby, from Aylesham, Kent, was born with the rare chromosome disorder isodicentric chromosome 15 syndrome, which led to her being diagnosed with severe Lennox Gastaut Syndrome epilepsy when she was just four years old.
The youngster’s condition became so bad she was unable to eat and even had to be put in a medically-induced coma after she had five seizures over eight days last summer.
It makes up four per cent of child epilepsy cases in the US, Florida Hospital statistics show.
LGS can cause ‘drop attacks’ – when a child suddenly falls to the floor, ‘atypical absence seizures’ – when they appear vacant or blank, and ‘tonic seizures’ – these only happen at night and cause stiffening of the limbs.
Speaking before, Ms Appleby said: ‘It just got really bad, very quickly. She seizures every day and she can seizure up to 300 times a day.
‘She’s lost all of her skills – she didn’t have many because she’s been delayed anyway.
‘Before she had epilepsy she could run around in the garden and feed herself but now she is completely dependent on someone to look after her.
‘She’s losing the ability to chew and swallow at the moment, that’s the latest thing to be affected. She’s very poorly.
‘The doctors have admitted to me that Teagan has one of the most severe cases of epilepsy they’ve ever seen. It’s so hard to control.’
The Home Secretary, Sajid Javid, announced in October that medicinal cannabis oil, including that containing THC, will be legally available on prescription in England, Scotland and Wales from November 1.
It is unclear why the youngster has not received THC-containing medicine, however, Epidiolex was enough to stop her seizures during the day.
‘If you’ve got a child who seizures 300 times a day, I’d be happy if it was just a 50 per cent decrease,’ Ms Appleby previously said.
‘All I’m after is a better quality of life for Teagan because she’s just not like she used to be and it’s heartbreaking watching her suffer. She’s always been very happy, very loving.
‘Luckily she doesn’t understand what’s happening, she doesn’t suffer in that way, it’s more that I have to watch her deteriorate. I can’t even put her in the bath in case she has a seizure and drowns herself. It’s just horrible.
‘It could be a whole new life for her, she could be like a whole new child.’
And, so soon after the rule change and with so few people receiving prescriptions, it is not yet widely available at pharmacies in the UK.
Read more from the source: DailyMail.co.uk