Billy back home to new battle with health chiefs over meds
Eyes blazing with anger, Charlotte Caldwell vowed to fight to overturn the latest obstacle placed in front of her in the treatment of her severely epileptic 12-year-old son Billy.
The Co Tyrone single mum described the decision by the Department of Health in Northern Ireland to only allow doctors in the Belfast Health Trust to administer the cannabis oil - which she says keeps Billy alive - as "child abuse" and "child cruelty".
Billy, she said, "is basically under hospital arrest".
She revealed that shortly before a Press conference yesterday in a Belfast hotel she had received a phone call from the trust telling her to go to the Royal Victoria Hospital at 10pm so that doctors could give Billy his medication.
"I don't know where I have to go in the hospital or who I have to see," she said.
"I don't even know where I will stay tonight."
A sign on the door leading into the conference read: 'Welcome home to Bill press conference' - but it was not the welcome anyone expected.
Billy receives his medication twice a day, at 10am and 8pm.
Charlotte, the strain evident behind the anger and determination to keep fighting, said: "As it stands we have to either move to Belfast or make two four-hour round trips a day from home in Castlederg."
She expressed her bewilderment at the Department of Health's decision.
"This is completely at odds with the view of the Chelsea and Westminster Hospital consultant who said he could go home and the Home Office, which recommended he did," she said.
"The contrast between the speed and compassion of the Home Secretary's response and the near silence and inaction of authorities in Belfast has left me feeling that senior figures in Northern Ireland will do anything to prevent me coming home with my child."
Charlotte has what she thinks is a common sense solution to the problem of administering Billy's medication - let a district nurse give it to him in his own home.
"I don't care who gives him the medication but he needs to get it at home," she said.
"Billy is at the highest spectrum of autism.
"He cannot talk and he cannot do anything for himself.
"He loves routine, having his toys, playing in his garden, growing his vegetables.
"It is four weeks since we have been home in Castlederg.
"We went to Canada to get his medication, stayed there five days and then flew into London where the cannabis oil was confiscated.
"When his medication was confiscated on a Monday, by Friday the seizures had started to creep back and he suffered back-to-back seizures that morning.
"He got his medication back over the weekend and he immediately began to improve.
"I have nothing but the highest praise for the doctors, nurses and paramedics at the Chelsea and Westminster Hospital for the way they looked after Billy.
"His treatment was second to none. We actually had to stay in the hospital because we had nowhere else to go."
Charlotte refused to admit that the strain gets to her.
"I am grand," she added in her distinctive accent.
"I just keep going because if I don't he would die and I cannot let that happen.
"I am also his voice."
As she spoke, Billy played with some small toys, muttering to himself and occasionally being carried by a member of Charlotte's campaign team.
With his distinctive long hair, which is now familiar to television viewers or newspaper readers across the UK, he is an unmistakable figure - a little boy at the centre of chaos.
His mum describes him as a "vulnerable, sweet little boy" and added: "I am just doing my job as his mum."
Billy needs 24-hour care but Charlotte ensures his days are as busy as possible.
He goes horse riding twice a week, swimming twice a week and has an afternoon school programme twice a week.
He loves playing and growing things in the garden - he and his mum live in a cottage on two acres of land. Charlotte defended her association with tech millionaire Paul Birch, who the Daily Mail recently said was part of a campaign to legalise cannabis for recreational as well as medicinal use.
She said: "Paul Birch is not interested in investing in the cannabis industry.
"What he does, and not many people know this, is help families like mine who need money.
"He deserves a medal and my little boy wouldn't be here today without him.
"People have to look at my position as a single mother trying to save my little boy's life."
She hit out at newspaper reports saying that at least four reporters had worked on the story, including coming to Northern Ireland.
"That must have cost a fortune and the newspaper would have been better served in giving that money to improve access to medication for families like ours."
The battle to effectively legalise cannabis oil for treatment of patients like Billy has moved forward in recent weeks.
Home Secretary Sajid Javid set up an expert panel headed by Northern Ireland's chief medical officer Dr Michael McBride to advise ministers on medicinal cannabis licence applications and already a number of applications have been made.
Meanwhile, the chief medical officer in England, Sally Davies, concluded after a review that there was evidence of "therapeutic benefit" for some conditions.
She and the Advisory Council for the Misuse of Drugs are looking at the possibility of rescheduling of cannabis which would make it legal for treatment and easier to obtain for research.
The recommendation from this group is expected to be given within three weeks.
While these are significant developments, aided in large part by the publicity surrounding Billy's case in the local and national media, Charlotte is more concerned with the immediate situation affecting her and Billy.
"Billy has not been great this last couple of days.
"He has had a bit of a meltdown this evening and having to wait an extra two hours to get his medication tonight will not help matters.
"That is too late for someone who needed routine."
She added: "I am at a loss to explain why the Department of Health here has not reached out to help Billy.
"What the department has done is complete abuse and cruelty in my estimation."
She then broke off the conversation to ensure that someone could take Billy for food while she finishes off the rest of her one-to-one interviews with the media.
He takes her hand and walks out of the room with her with a broad smile on his face. This is one of the routines he is familiar with.
Charlotte is now gearing herself up for another of those familiar routines.
"We've been into battle once before and won," she said.
"We're ready for the next round."
She may be tired after flying back to Northern Ireland and sitting through numerous interviews, but there was no mistaking the determination to keep fighting for Billy.
As she said: "Billy's meds may have been delivered to the Belfast Trust but their arrival is far from a victory for either Billy or common sense."