Published: 19:23, 16 October 2021
| Updated: 21:42, 16 October 2021
A mum who has to find £2,000 a month to buy products containing medical cannabis for her severely epileptic daughter, is 'gutted' after her TikTok account was taken down during a16-hour fundraiser.
Teagan Appleby, from Aylesham, suffered up to 300 seizures a day before her condition improved with medicine containing a marijuana-derived substance.
The costly treatment is deemed essential to her health by parents Emma Appleby and Lee Moore - but at around £2,000 a month they have to fundraise to buy it because it is not available on the NHS.
Teagan suffers from a rare genetic condition called Idic15.
Epilepsy can come as part of this and Teagan has a very severe case called Lennox Gastaut Syndrom. Previously it led to up to as many as 300 seizures a day of varying severity.
She now switches between drugs Celixir, Bedrolite and BODAUS which helps reduce the seizures to under 10 a day.
Today, from 8am, people from across the UK have been hosting fundraising events and challenges with social media a key way of boosting donations and raising awareness.
But the TikTok suspension, which came out of the blue, has meant Mrs Appleby cannot reply to those involved and speak to people who log on and ask questions about her daughter.
She says social media is essential for keeping a fundraising tally going and the family has already lived through many lean months when the Covid lockdowns meant gatherings were banned and donations dried up as people felt the financial squeeze.
Mrs Appleby said: "It is just gutting. Having to find thousands every month is a huge commitment and it is only made possible by social media and being able to react.
"I was only browsing and watching live videos when I got a notification the account had been suspended.
"Events are running from 8am until midnight and while we can use Instagram and Facebook, it is the video sharing that people like the most."
She has emailed TikTok, and has urged her followers to do the same.
TikTok later got in touch with KentOnline to say her account had been unsuspended.
It is not the first time her account has been removed. Earlier this month it was mistakenly taken down, but was quickly re-instated.
Teagan is able to have medicinal cannabis prescribed after the law changed in 2018.
Her parents used to travel to Holland to collect Teagan’s medication, a preparation called Bedrolite, at a cost of £2,500 per month.
Until their last trip in December 2019 they were committing an offence bringing it back into the UK without the right documentation.
They were stopped on numerous occasions and had the medication confiscated, only for it to be returned a few days later.
They were never charged for the offence and her medicines are now imported legally from Israel.
In February 2020 Dover and Deal MP Natalie Elphicke called on then health secretary, Matt Hancock, to release the block on getting such treatments in England.