Mother of epileptic girl, 9, who suffers up to 300 seizures a day claims she ‘could have a whole new life’ by taking cannabis oil after Government announces it will be legal next month
- Teagan Appleby, from Aylesham in Kent, is regularly hospitalised by her illness
- She keeps becoming resistant to traditional medications and is getting sicker
- Her mother, Emma Appleby, hopes cannabis oil will help as it has other children
- Ms Appleby is raising money to take her daughter to Holland to get the meds
- And she says it is ‘promising’ that the Government will allow it in the UK
A mother whose daughter suffers up to 300 seizures a day because of severe epilepsy hopes the legalisation of cannabis medicines will save her child.
Teagan Appleby, nine, started having seizures five years ago and her condition has now become so bad she is losing the ability to eat by herself.
Her mother, Emma Appleby, from Aylesham in Kent, says it is ‘heartbreaking’ to watch her daughter suffer as traditional medications don’t work for her.
She is raising money to take her daughter to Holland to get cannabis oil and says the Government’s progress on accepting the drugs is ‘promising’.
The Home Secretary, Sajid Javid, said last week that medicinal cannabis oil will be legal on prescription in England, Scotland and Wales from November 1.
But Ms Appleby, 35, plans to take her daughter abroad because she believes it will take time for UK doctors to be trained to prescribe it and set up a supply chain.
Teagan Appleby, nine, suffers from a rare form of epilepsy which can cause her to have as many as 300 seizures a day, according to her mother Emma Appleby – she is currently in hospital because her condition is hard to control
‘The government announcement is promising but in no way is it guaranteed,’ said Ms Appleby.
‘The product still has to be available for supply in the UK and doctors will need training on how to dispense and prescribe so we are still planning on going abroad, as soon as possible.’
Teagan was born with isodicentric chromosome 15 syndrome, a rare disorder which causes severe epilepsy and delays mental development.
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She can now suffer hundreds of seizures in a day – and their effects are so damaging that doctors recently placed her in a medically-induced coma to stop her fitting.
Ms Appleby is fighting for her daughter to be given a cannabis oil containing the chemical THC, which is what gives people a high and is what makes the drug illegal.
But THC has been shown to help children with epilepsy – famously Billy Caldwell who, at the age of 12, became the first person ever to be prescribed it by the NHS.
Billy’s mother Charlotte Caldwell, from County Tyrone in Northern Ireland, bought her son cannabis oil in Canada but had them confiscated at Heathrow Airport in June.
After a high profile campaign during which Mrs Caldwell feared her son would die without the medication, the Government allowed him to keep taking the drugs.
Teagan began having seizures when she was four years old and they have become worse and more frequent as she’s gotten older – in one case doctors even had to put her in an induced coma to stop her fitting
The nine-year-old, who used to be able to run around the garden, now struggles to eat by herself because her condition has deteriorated so much. Her mother, Emma Appleby, hopes cannabis oil will help control her symptoms
Ms Appleby (left, with her daughter) is raising money to take Teagan to Holland to get the medicine, and says the UK Government’s announcement that it will be legal from November 1 is ‘promising’
Ms Appleby hopes her daughter will be allowed to take the same medicine, which she believes could give her ‘a whole new life’.
Doctors had refused to put Teagan’s case forward to a Home Office panel for a licence because of the taboo surrounding the controversial drug.
But, following Thursday’s announcement from Home Secretary, Ms Appleby says the move could finally alleviate her daughter’s crushing symptoms, although it is still unclear if and when she would get a prescription.
She has had to call an ambulance at least once a week in the last couple of months and Teagan is currently in hospital, suffering around 70 seizures a day.
‘It just got really bad, very quickly,’ said Ms Appleby.
‘We’ve tried multiple medications but she gets used to the medication very quickly and it starts wearing off so nothing seems to be helping.
‘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.’
Teagan (pictured with her father, Lee Moore) could be eligible for cannabis oil on the NHS when it becomes legal but her mother says it could take a while for doctors to be trained to prescribe it and to set up a supply chain
Teagan could have a ‘whole new life’ if she is able to have the cannabis oil treatment, her mother says
Before the Government’s announcement, Ms Appleby set up a fundraising campaign to get Teagan to Canada for a THC trial because it was not legalised in the UK.
But she is now looking to take her to Holland, where it is legal.
WHAT IS EPILEPSY?
There are a number of common misconceptions surrounding epilepsy.
People often think of it as a mental disorder. In fact, it is a physical neurological condition that does not affect the person’s day-to-day mental abilities.
Epileptic seizures are triggered by a sudden interruption in the brain’s highly complex electro-chemical activity.
Although it can develop at any age, it is diagnosed most often before the age of 20 and after the age of 60. Men have a slightly higher likelihood of getting the condition than women.
Once diagnosed with epilepsy, a patient will be given a type of antiepileptic medication. This treatment controls seizures in up to 80 percent of patients.
Often it’s a matter of trial and error to find the best drugs.
Alife Dingley, from Kenilworth in Warwickshire, was the second child to be prescribed the drug in the UK and his condition is now under control, Ms Appleby said.
‘The results are better with THC. Alfie Dingley is on THC products and his seizures stopped – he is completely seizure free.
‘So 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.
‘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.’
There are currently just three children in the UK who have a licence to use cannabis oil.
Alfie Dingley, Billy Caldwell and Sophia Gibson are the only ones who have been granted permission.
Within days of using the product, Alfie’s seizures stopped completely and he has even learned how to ride a bike.
Ms Appleby has had to take Teagan to hospital at least once a week over the past couple of months because she keeps having severe fits, and she says she cannot even put her daughter in the bath in case she has a seizure and drowns
His mother Hannah Deacon, 39, is now an ambassador for the End Our Pain campaign, which has called for a change in the law to allow doctors to prescribe cannabis.
‘With children such as Teagan with severe epilepsy they seem to respond best to full extract cannabis oil, which means there are other cannabinoids along with a small amount of THC,’ she said.
‘We believe it’s more effective at treating severe epilepsy because they give what’s called the entourage effect which means all the cannabinoids work together in synergy.
‘What the Home Office is doing is actually really bold and really positive.
‘It’s a big change and a big different way of thinking and I think to be fair to doctors that’s a big ask and I think a lot of education needs to be given so it is difficult for doctors to prescribe or ask for licences for.’
To support Teagan’s fundraising appeal, visit her mother’s JustGiving page.
THE LANDMARK CASE OF BILLY CALDWELL THAT PROMPTED THE GOVERNMENT TO CHANGE ITS STANCE ON MEDICINAL CANNABIS
Billy Caldwell’s mother Charlotte (pictured together) had seven bottles of cannabis oil confiscated at Heathrow Airport customs, prompting a row over cannabis oil
Cannabis oil was thrust into the limelight when epileptic boy Billy Caldwell’s mother had seven bottles confiscated at Heathrow Airport customs.
The 12-year-old sparked a row over the medicinal status of the oil, prompting the Home Office to step in and grant his mother Charlotte an emergency licence for his product that was calming his seizures, which contained THC.
Billy’s bottles were confiscated on June 11 after she brought them in from Toronto.
On the back of the cases of Billy and fellow epileptic boy Alfie Dingley, six, Home Secretary Sajid Javid called for a review into medicinal cannabis.
In a major shift of policy, he announced in July that some products containing the drug would be available on prescription in the UK from the autumn.
And earlier this week it was revealed cannabis-based products for medicinal use will only be available for specialist doctors – not GPs – to prescribe legally.
Officials have yet to confirm which medicines may be prescribed, but said they must be regulated as a medicinal product.
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