Published: 00:01, 19 March 2019
A despairing mother says she is planning to break the law by bringing a medical cannabis product back into the UK from Holland to help save her child’s life.
Emma Appleby, from Aylesham, says her daughter Teagan, who is just nine years old and suffers an acute form of epilepsy caused by rare chromosome deficiency called Isodicentric 15, is desperately in need of the drug.
At the end of last year, the youngster was given cannabis-based medication Epidiolex at the Evelina Children’s Hospital which initially worked, stopping all her seizures while she was awake, although not while she slept.
Scroll to hear from Teagan's mum
But Miss Appleby says the effect has plateaued and since February she has been suffering aggressive fits, which cause her to stop breathing, turn grey and rely on rescue medicine to save her life.
The 35-year-old now wants wheelchair-bound Teagan to be treated with THC - tetrahydrocannabinol - the strongest form of cannabis treatment, believing it will prevent all her seizures.
But this is not readily prescribed by doctors, despite a change in law on November 1, 2018, making it legal for neurologists and other specialists to prescribe medical products derived from cannabis.
Miss Appleby said: “Previously Teagan could seizure up to 300 times a day but from December, after having cannabidiol (CBD) Epidiolex, this stopped.
“But the effect is no longer working - the seizures are less frequent but more aggressive - and we are desperate to access full extract cannabis oil on the NHS.
“Currently we are being told that our doctor is not allowed to prescribe it.”
Campaigners argue that despite the law change, strict policy and guidelines means patients are still denied access to products, including THC.
But Miss Appleby, from Milner Crescent, says Alfie Dingley, a young epileptic boy from Warwickshire, is on a mixture of CBD and THC and has been seizure free for just under a year.
Teagan and Emma spoke to KMTV after she had her treatment at the end of last year
She said: “Every night I lay in bed wondering if my little girl will make it through the night. No parent should be put in that situation.
“If Teagan doesn’t get this whole plant medical cannabis, we fear she will end up back in intensive care from uncontrolled seizures.”
Miss Appleby is now awaiting a doctors appointment for Teagan in Holland to get the medication and bring it back to the UK.
She admits it is a costly and illegal process.
“We’ll be breaking the law bringing it back here and I might get arrested but as a parent you do whatever you can for your child.
“I would die for her.”
Office worker Miss Appleby takes her fight to Parliament today alongside families of 15 other children suffering from intractable epilepsy to lobby MPs on what they believe is a failure to deliver on access to medicinal cannabis.
Their campaign End Our Pain includes a petition which has been signed by more than 520,000 people and was handed in to No 10.
Campaign spokesperson Peter Carroll says the Home Secretary took the “bold and decisive” step to legalise access to medical cannabis but the Secretary of State for Health and Social Care has implemented a policy in a way that means patients are denied access.
Mr Carroll added: “It’s unforgivably cruel that families have had their hopes raised and now dashed.
“Many of them are having to fundraise to take their children on lengthy and costly trips to Holland to get the treatment that is now legal in the UK.”
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More by this authorMarijke Hall