Without the oil, Bailey, who lives with his family in Fairwater in Cardiff, may suffocate or hurt himself falling over, meaning he can never be left alone.
“It’s absolutely crippling,” said Rachel.
“We are so tired of fighting for this, and the suffering is just immense.
Before being prescribed cannabis oil privately, Bailey, who has the rare form of epilepsy known as Lennox Gastaut Syndrome as well as learning difficulties, tried scores of drugs.
“He tried over 20 pharmaceutical drugs, vagus nerve stimulation and a ketogenic diet,” said Rachel.
“It was at that point that we read about the story of Charlotte’s Web – a little girl in Colorado, Charlotte Figi, got put on this this oil and she became seizure-free.
His rescue meds were very few and far between and he started to grow and become more healthy.
However, as the treatment was only hemp, and not full extract oil, it stopped working after two years.
However, only a “specialist doctor” and not a GP can prescribe what the UK Government terms “these unlicensed medicines”.
“Everyone has rallied around us as we’ve done lots of various events to raise the money,” said Rachel.
“Bailey is really sensitive to drugs and we were really worried about him going on it,” said Rachel.
“When we were able to get back on the oil again, the whole Bailey came back,” she added.