Family of epileptic youngster celebrate 'momentous' day after bringing home cannabis medication - The Leamington Observer

Family of epileptic youngster celebrate 'momentous' day after bringing home cannabis medication

Leamington Editorial 14th Jul, 2018   0

THE FAMILY of an epileptic Kenilworth youngster celebrated a ‘momentous’ day after finally bringing home his medication.

Hannah Deacon, the mum of six-year-old Alfie Dingley, returned from Amsterdam on Tuesday (July 10) with a legal, five month supply of cannabis oil for her son.

It comes after he was granted a permanent licence for the drug.

The 39-year-old smiled as she walked through London City Airport and said the medication will be life-changing for the whole family, especially Alfie, who used to suffer up to 30 seizures a day.

Hannah says when her son is taking the cannabis oil these drop to around one a month.

The mum-of-two said: “It was a momentous day. We finally brought home Alfie’s medicine.

“He has been granted a permanent and long-term licence, the first of its kind in the country. We are so happy and very overwhelmed. For me and Alfie it’s life changing.”

Hannah brought back a 30ml supply of oil which should last for five months. In future the drugs will be imported to Alfie’s GP who will approve a prescription.

The cannabis oil treats a rare form of epilepsy which Alfie suffers from, known as PCDH1. It affects just nine children in the world and causes catastrophic clusters of seizures which are unresponsive to anti-epilepsy drugs.

His family previously travelled to Holland where the cannabis treatment is legal and said his condition improved ‘drastically’ there.

But after funds started to dwindle the Deacon family were forced to return home to Kenilworth.

Since they returned earlier this year Hannah has been campaigning tirelessly to access the drugs for her son.

But it was not until home secretary Sajid Javid approved the medication for Alfie some three months later that the family finally had ‘peace of mind’.

Now Hannah says she will work to help other families who need the oil.

She said: “Now we need to focus on ensuring all who need access to medical cannabis under prescription can get it quickly.

“I will carry on fighting for this until it happens and where there’s a need it can be met, not by bureaucracy and hurdles but by a doctor who can prescribe and help alleviate symptoms.

“Every family in the UK who needs medical cannabis for their child should be able to get a prescription. Anyone who needs this medicine should be able to get a prescription.

“Before it was like living in hell and now my children can happily walk to school together. It has changed my Alfie’s life and I’ll keep fighting until everyone has the right to be prescribed this medication.”

Alfie’s use of the drugs has shone a light on the use of cannabis oil to treat some health conditions and the government now says it will be looking at cases on an individual basis.

A panel of clinicians will now be set up to advise the government on applications to prescribe cannabis-based medicines.

Recreational use of cannabis will remain illegal.

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