Bailey has Lennox Gastaut Syndrome, a drug resistant form of epilepsy
The fight to secure medical cannabis for a sick South Wales child is being stepped up.
Bailey Williams from Cardiff has severe epilepsy and his condition has deteriorated in the last week.
He was taken to hospital last Thursday, suffering more than 300 seizures during his admission.
The episodes are leaving him unable to swallow, walk, or talk and his mum fears for his life.
Rachel Rankmore has written to the First Minister urging him to intervene - after being spurred on by cases like Alfie Dingle and Billy Caldwell.
On her Facebook page, Rachel said: "To All Our Amazing Caring and Supportive Followers. Just to update you what we have to do, due to the restrictive guidelines that have been set out for the prescribing of Medicinal Cannabis.
"Bailey has regressed over the last 10 months and that is due to a few factors:
- He had to have his VNS replaced Oct 2017, which is fine. You again weigh up the risks and benefits of that operation, but what we only found out a few months ago, was that the new unit they put in, could not be put up to the high settings that Baileys old unit was set to. This is what was controlling the little head drop seizures and absent seizures for him. So hence to say he has been gravely struggling with the control of these due to this new unit.
- Bailey has Lennox Gastaut Syndrome. It is a drug resistant form of epilepsy so the drugs are failing to have the same effect. In fact, they are now sedating him and giving him withdrawal side effects.
- The effects of his seizures are taking away his ability to live. We are slowly losing our Bailey all over again. His personality, watching him enjoy his food and actually feeding himself is regressing, He is slumped in a chair with his tongue resting on his lips and drooling. His eyes are barely open and his ability to interact is debilitating. He is in a confused and sleepy state of mind the smallest of tasks is exasperating for him and he has to sleep. He isn't talking as much and his whole persona is slowing down. He is not enjoying life. He is giving up.
"So while we wait for these very intelligent people with letters after their names to decide whether our children live or die, we have to do all we can to try to prevent the unthinkable.
"We have purchased and started to administer Bailey with a stronger CW CBD oil. It's our only option. We know he needs the full extract cannabis oil with THC but we have no way of obtaining this."