THE parents of a two-year-old child that lives with severe epilepsy, have said that the cost of medicine to keep their child almost ‘seizure free’ is becoming ‘unmanageable’.
Emily Howis and Spencer Carkeet, the parents of Clover Carkeet, say they are spending £1,000 a month on medical cannabis that has been legally available via the NHS since November 2018.
However, the Frome family, including many others across the UK, have been denied an NHS prescription, forcing them to pay for private prescriptions.
According to the End Our Pain Campaign – which Clover’s parents, Emily and Spencer, are active supporters of – only three people have received an NHS prescription since it became legal in 2018.
The Frome family, who spoke to Frome Times last year about the difficulty accessing the “life transforming” medical cannabis – have again backed the End Our Pain Campaign’s plea to Prime Minister Boris Johnson to give people access to medical cannabis via the NHS.
“We have now found a great dose for Clover,” explained Clover’s mum, Emily, speaking to Frome Times. “She takes a high CBD oil (Bedrolite) and a very low dose of a high THC oil (Bedica).
“Before Bedrolite and Bedica, she would have 30+ clusters of seizures every week. She now has one to two clusters a week maximum, and those seizures are mild and manageable. She recovers immediately from them and carries on her day.
“She is healthy, sleeps well, eats well and has an incredible immune system.
“But £1,000 a month is unmanageable for our family. Once the fundraising runs out, we will struggle to keep up with these payments each month, and the consequences of running out of oil could be dire for Clover.
“We are pleading with the government, both local, and central, to help us. Clover needs their support.”
As the family continues its campaign, friends and family have rallied round to help raise money for Clover’s ongoing medicine costs.
Family friend, Leigh Evans, will next month take part in the Race to the Stones – a two-day race running a total of 64 miles along the Ridgeway, the oldest path in the UK. So far he has raised over £2,200 for the family.
“The support from Leigh has been incredible,” said Emily. “We are eternally grateful for the effort that he is putting into this. Every penny raised goes towards keeping Clover happy and healthy, and we can’t thank him enough.
“Frome is a wonderful community, and the way everyone is getting behind Clover is so amazing and heart-warming.”
About why he has taken on the challenge, Leigh said, “I really wanted to do anything I could do to help the family, as they are self-funding for the medication, and it has such incredible benefits for little Clover.
“What they have to do to get the results that they need with Clover’s medication is really taxing on them, and I just want to help them out – it’s the least I can do.”
To donate to Leigh’s fundraiser for Clover, visit the website: www.gofundme.com/f/leighs-race-for-clover. To follow Clover’s story, visit her Facebook page for updates: www.facebook. com/cloverbearandhermagicbrain
Pictured: Parents Spencer Carkeet and Emily Howis with their daughter Clover.
