Mother of youngster with severe epilepsy says her son could die when his life-saving cannabis medication is stopped due to Brexit - The Leamington Observer

Mother of youngster with severe epilepsy says her son could die when his life-saving cannabis medication is stopped due to Brexit

Leamington Editorial 7th Jan, 2021   0

THE MOTHER of a nine-year-old with severe epilepsy fears he could die when the supply of his life-saving cannabis medication is stopped due to Brexit.

Alfie Dingley from Kenilworth has refractory epilepsy which causes catastrophic clusters of seizures that are unresponsive to anti-epilepsy drugs.

Mum Hannah has campaigned tirelessly for her son to take Bedrolite oil, and in 2018 he was given a prescription for the drug – which prevents the seizures he used to suffer 30 times a day.

But due to Brexit the medication from the Netherlands is set to stop.

Hannah was given two weeks notice by the Department of Health and Social Care that due to the end of the transition period “prescriptions issued in the UK can no longer be lawfully dispensed in an EU member state”.

Now she fears without the medication her son will again begin suffering uncontrollable seizures, which can result in death.

She told the Observer: “This situation is urgent and needs resolving.

“Alfie has refractory epilepsy so by the nature of this to change anything in his medicine regime would put him at risk of hundreds of seizures.

“Our doctors have said they believe he would be at great risk if we were to swap anything now when he’s doing so well.

“The seizures that Alfie has put him at risk of death it is simple as that.”

In 2017 Hannah moved her family to Holland so Alfie could get the medication he needed, but they were forced to return home when funds ran out.

And she says she is determined to ensure he and other epileptic children receive the oil which stop them suffering potentially deadly fits.

Hannah added: “I will fight this all the way.

“I want the prime minister to save my sons life by ensuring he talks to the Dutch authorities and ring-fences Alfie’s and the other children’s prescriptions who need it.

“If we do not get a result from this there will be 42 families whose children’s lives will be at risk.”

The Department of Health said the issue was raised in December and since then wholesalers of the product have been asked to take immediate action to work with doctors to guarantee supply and look into alternatives.

A spokeswoman said: “We sympathise with patients dealing with challenging conditions and we are working urgently with the Dutch government to find a solution which will enable patients to access the medications they need.”

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