Six year old's vital medication runs out because of Brexit changes

Click here to watch a report by ITV Anglia reporter Charlie Frost

The parents of a six year old girl from Suffolk, with severe epilepsy, have run out of her medication, because of Brexit. 

Indie-Rose who comes from Clare uses a cannabis based medicine, prescribed by doctors here, but imported from the Netherlands. 

But since new rules came into force at the beginning of the year her prescription is no longer recognised by EU countries.

The medication six year old Indie-Rose relies on to ease her life threatening seizures has for now, run out 

There is just no route of access, so, because of Covid we can't fly, because of Brexit and the new rules we cannot obtain it legally at the moment anyway, so there's like a blanket ban on the only medication that she takes, she doesn't take any other medication, so we have nothing else to give her.

Tannine Montgomery, Indie-Rose's mum

Indie-Rose has Dravet syndrome, a very rare and very severe type of epilepsy.

She had her first seizure at four months old and despite doctors trying eight different treatments by the time she was three, she was having up to seventy-five fits a day 

It was then her parents began to look into medicinal cannabis.

Parents successfully campaigned in 2018 to get government approval for the cannabis based medication

After campaigning to make their daughter's medication legally accessible In 2018 the UK government granted specialist doctors the power to prescribe Bedrolite oil, the drug Indie-Rose and fifty other children, depend on.

We got to about 4 fits a month, so the difference is absolutely huge. And crucially just her happiness and just the fact that her body's not suffering from having seizures all the time

Tannine Montgomery, Indie-Rose's mum

Now unless something is done quickly Indie-Rose's family fear the return of the multiple seizures that could put her life at risk.

Indie-Rose with her family

Aware that time is running out her parents are now appealing to the government to help find a solution that will enable Indie-Rose to have as normal a life as possible

As long as I can talk for her, I will. I think we have to keep pushing them to help us and to help our children.

Tannine Montgomery, Indie-Rose's mum

People in the UK have epilepsy that's about one in every 100

You can find out more about Epilepsy Here