Tycoon and actress back Kenilworth boy's campaign for epilepsy treatment - The Rugby Observer

Tycoon and actress back Kenilworth boy's campaign for epilepsy treatment

Rugby Editorial 21st Mar, 2018   0

VIRGIN tycoon Richard Branson and actress Joanna Lumley are backing a campaign for a Kenilworth youngster’s right to life.

In a heartfelt video Absolutely Fabulous star Lumley is urging people to put pressure on the Government to allow six-year-old Alfie Dingley medical cannabis to control his life-threatening epilepsy.

Known as PCDH19, the rare genetic disorder affects just nine children in the world, causing catastrophic clusters of seizures which are unresponsive to anti-epilepsy drugs.

The family moved to Holland in September so the youngster could legally take the oil which dramatically changed Alfie’s life, cutting his seizures down from up to 30 a day to just once a month.




But after being forced to move back home due to dwindling funds and difficulty getting medical insurance, the Government denied a plea to grant Alfie a licence to use cannabis oil.

Following a number of appeals to the Home Office, alternatives have been discussed including a medical trial led by Alfie’s doctors.


But so far no decision has been made.

In her appeal to the public, the actress said: “As a parent and grandparent I find this truly heart breaking. I can’t imagine the anguish of the family as he is taken to hospital after yet again another ghastly life threatening seizure.

“He needs a remedy now not in weeks or months after a lengthy debate.”

She has called on people to write to their MP and support the family in the battle for ‘the right to let their little boy live’.

And billionaire businessman Branson – who is member of the Global Commission on Drug Policy – has also written about the medicinal benefits of cannabis oil on his Virgin website where he highlights the youngster’s plight.

He wrote: “Should any family in this situation have to fight against the odds like this? This is a caring family demanding access to a medicine and they shouldn’t have to break the law to get it; drug use – both medicinal and recreational – shouldn’t be a matter of criminal justice, but a matter of public health.”

In response to the support, Alfie’s mum Hannah said: “We are thrilled and honoured that two such famous and busy people should take the time to support our fight for Alfie. “We thank them from the bottom of our hearts for their generosity.”

And on Tuesday the family invited MPs to meet Alfie face to face as well as presenting a 350,000 signature petition to ten Downing Street.

Search Alfie’s Hope on Facebook to find out more.

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