Published: 15:13, 25 July 2019
| Updated: 17:58, 25 July 2019
A desperate mother warns her seriously ill little girl may not make it if she is no longer able to access cannabis-based medication.
Emma Appleby's daughter Teagan suffers from a severe form of epilepsy, previously resulting in up to 300 fits a day.
But her condition has improved considerably since she started taking a cannabis oil drug, which has been prescribed by a doctor privately while the family's request for an NHS prescription is considered by health authorities.
Miss Appleby took to Facebook to share the news
Now, in what is a devastating blow to the family, who live in Aylesham, the doctor says he can no longer provide the prescriptions.
Miss Appleby says this likely means the request for NHS funding has been turned down.
"I haven't had confirmation yet, but I think it's for that reason the doctor is not prescribing any more," she said.
"This is a massive blow because they sounded quite confident the individual funding request (IFR) would go through and that she could have a prescription on the NHS."
It means the family must continue to find £2,500 every month to pay for the medication from abroad privately.
"We just about have enough for the next batch and I think we've found somebody that can import it legally at the flat cost," she said.
"I'm hoping for the next five weeks we'll be ok. After that I don't know what I'm going to do."
Teagan, who turns 10 next week, underwent surgery this week and Miss Appleby says staff are amazed at how well she is compared to last year, before she started taking CBD medication.
Cannabis oil can be legally prescribed in the UK by specialist doctors, but obtaining prescriptions has proved difficult due to restrictive guidelines and supply problems.
"I'm scared she'll go back to how poorly she was last year..." - Emma Appleby
Miss Appleby, of Milner Crescent, took matters into her own hands earlier this year and went to Holland herself to get the medication, which was initially seized by border control before being handed back following government intervention.
But she admits she will struggle to continue to fund the drug privately.
"People have been amazing helping with fundraising but there's only so much people can do and I can't keep asking people to help me," she said.
"I don't know how I can keep her on the medication. I'm scared she'll go back to how poorly she was last year."
She admits she fears for her daughter's life.
"If she loses this medication it will kill her," she said.
"She was so poorly last year, I didn’t think she was going to come out of intensive care.
"It's improved her life so much - I can't go back to how she was."
Miss Appleby says everyone in the government is so preoccupied with the new Prime Minister Boris Johnson they are forgetting about sick children.
"It's a rubbish time to get help from the government right now, but our children don't have time," she said.
"They need this medication right now. Families can't afford to keep paying this much money.
"I'm terrified of what's going to happen in six weeks when I can't afford it."
Miss Appleby is holding a family fun day on Sunday, August 4, to celebrate Teagan's 10th birthday and raise funds. The event is at Aylesham Welfare Leisure Centre from 10am to 4pm.
An NHS England spokesman said they do not comment on individual cases.
To donate to Help For Teagan click here.
More by this authorMarijke Hall