A mother of a seven-year-old girl with epilepsy says she may have to sell the family’s home to pay for treatment abroad because they have not been able to get a prescription on the NHS.
Sam Fairlie, from Leicester, wants her daughter Maya to try Bedrocan – which Carly Barton has been prescribed on an extortionate private prescription – because the intractable condition has proved to be resistant to pharmaceuticals. This should surely meet the terms set out by strict guidelines that all other options should be exhausted before specialists prescribe a cannabis-based medicine.
“She lives her life in a 24/7 fog, because her absent seizures are continuous,” Sam told Leicester Live. “She was a very able six-year-old but within the last 12 months or so she has lost her speech and we have even had to pull her out of school. She is only here with us as a body and not a person.
“It’s affecting the whole family, I have another daughter who is 10 and the situation affects her as well. I just want a better quality of life for my family.”
Maya is currently administered a course of steroids as well as anti-epilepsy medication made up of clobazam, Ethosuximide and sodium valproate, and a recently prescribed medication called sulthiame. But nothing is working.
Sam added: “I have started to looking abroad for treatment but this would be very costly and could mean selling our home. Why should we have to do this when it is legal to prescribe it in our own country?
“Maya has really deteriorated over the past year. I want my little girl back.”