The Suffolk family of a four-year-old girl with a severe form of epilepsy say the government’s decision to review the law on the medicinal use of cannabis is “really good news”.
Indie-Rose Clarry, from Clare, near Sudbury, has Dravet syndrome – a severely disabling type of epilepsy which leaves the toddler at times unable to walk or chew her food.
She has endured eight anti-epileptic drugs with no response in reducing her seizures, but the family have seen progress with CBD oil – a chemical produced by the cannabis plant, which is not available in the UK as a prescribed medicine.
Indie and her family will travel to the Netherlands – where CBD oil is fully regulated – later this year to seek professional guidance from a neurologist. Indie’s dad, Anthony Clarry, welcomed the news this week that the home secretary will launch a review into medicinal uses of cannabis after two high-profile cases highlighted the issue.
Billy Caldwell, 12, and six-year-old Alfie Dingley, who both have severe forms of epilepsy, have seen results with CBD oil and their families have been calling for it to be freely available.
Mr Clarry, 32, said: “It’s really good news that Sajid Javid has announced that he will review the law on medicinal cannabis because so many people are having similar problems.
“A lot of people are using CBD oil and getting really good results, which gives us a lot of hope.
“We are right behind the families fighting to change the law. We’ve been in contact with a few of them to find out how they’ve been getting on.
“We’ll be going to Holland in September to see an expert neurologist and should all go well with the treatment, then we’ll be looking to bring some CBD oil back.
“I suppose we’ll then have our own fight with the government but we’re hopeful that things may have moved on by then.
“But we’re prepared to do all we can to get the help we need.”
Mr Clarry thanked the community in Clare for their support with many fundraising events, which have helped fund the trip to the Netherlands.
A fundraising day called ‘Indie Fest’ at the Swan pub in the village, which was held on Sunday, June 10, raised around £4,500.
“It’s amazing,” he said. “People have been so supportive and generous and money is still coming in.”
Mr Clarry added that a fundraising 20-mile walk from Bury St Edmunds to Clare, organised by Giles and Juliette Bryant, also took place on Thursday.
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