Cannabis oil kept this boy from having hundreds of seizures a day
The family of a teenager with a rare form of epilepsy struggles to pay £ 4000 each month for cannabis oil to prevent him from having hundreds of seizures a day. Thanks to fundraising funding, Bailey Williams' parents managed to raise £ 15000 but already know they will no longer be able to continue asking for money. Now they are asking the UK public health system to start writing prescriptions so that they don't have to pay for this drug or get it 'private'. Some hope has emerged at Bailey of Cardiff, after a change of law in November has meant that THC-containing drugs become available for prescription from specialist physicians.
Thousands of pounds a month for medical cannabis prescribed by private prescription because she can't get it through the NHS
Rachel Rankmore is terrified of losing her 17-year-old son Bailey Williams as she cannot afford the colossal bill for the treatment. Bailey has Lennox-Gastaut syndrome, a form of epilepsy that has only been found in about five out of 100 children and was diagnosed at the age of two.
To prevent him from suffocating his parents are forced to sleep near him to watch him every night. At first, his condition was manageable for his parents, Rachel and Craig Williams, 48, a garage manager, and he only had a seizure once or twice a month. But his seizures worsened and by the age of seven, Bailey was doing hundreds of times a day. In the worst case scenario, Bailey's fits cause him to fall to the ground and turn blue, often leaving him in a wheelchair and unable to feed or speak.
Rachel, a mother of two, says: “We let him take so many drugs, but nothing seems to have worked. The crises are just horrible. When they happen, you can hear every bone in her body cracking. It's absolutely heartbreaking, but we had to learn to put our emotions aside.
It's hard to explain what it's like to take care of a sick child and we have to spend time fixing our families now.
Rachel says the medication he is taking now allows him to play with his father and brother, which was "very moving to watch". She called on the NHS (UK Public Health System) to start providing prescriptions so families don't lose effective drugs due to their bank balances. Rachel added: “It's really frustrating because the law has been changed, but it is not being acted upon. People have said it's not about money, but it clearly is. We can't keep asking people for help, we can't keep begging for money. We may eventually have to remortgage our house, because we cannot go back to the situation that prevailed before we started taking this medicine ”.
But it's still not available on the NHS, which means Bailey's parents have to pay a neurologist in London thousands of pounds for the drugs he takes three times a day. They say they have tried so many treatments and drugs over the years, but this one is the only one that has made a difference.
For Rachel considering returning to a time when Bailey's cannabis oil is no longer available is impossible, she fears for her son's future if the drug is not available through the NHS.
Bailey's fundraising page can be found at gofundme.com/e/mission-for-baileys-shakes