This is the moment two devoted mums battling to save their sons from the same life-threatening condition met for the first time.
Marie Siddans’ 15-year-old son Harry punches the air with glee as his delighted mother looks on, while Charlotte Caldwell cuddles her boy Billy – grateful her crusade to make medical cannabis free for children with severe epilepsy has helped one more family.
“I just wanted to say just how thankful we are to you for helping us with Harry,” Marie told Charlotte. “It’s so special and means the world to us. It feels amazing to finally meet you in person.”
For two years, Charlotte has been on a one-woman mission to stop parents of children with the condition having to pay thousands of pounds for treatment.
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Her 17-year-old son made history when he was given the first NHS-funded prescription for medicinal cannabis in the UK in November 2020.
And that was only after desperate Charlotte broke the law, making headlines in 2018 when she openly smuggled the banned drug here from Canada.
The medication was seized by customs officials – but returned to Charlotte the next day after then-Home Secretary Sajid Javid stepped in as Billy’s condition became life-threatening. He granted an emergency licence allowing doctors to treat him.
Mr Javid also called for an urgent review of cannabis based medicinal products.
And Charlotte’s determination to fight for her son led to a law change allowing specialist doctors to prescribe them when licensed products would not work.
There is now no limit to the type of conditions that can be considered for treatment, but progress to help more children is painfully slow.
Since the legal change only a handful more children have been given the drug free on the NHS – leaving around 90 families with severely epileptic youngsters forking out up to £2,000 a month on private prescriptions, with fees on top.
Medical cannabis is still not routinely available on the NHS because of a lack of clinical trials by the manufacturers.
So Charlotte, 51, has been lobbying pharmaceutical companies, pleading with them to give free cannabis medication to children with lifethreatening epilepsy. And one of the first two youngsters to benefit is Harry, from Dunmow, Essex.
His mum Marie, 48, got in touch with Charlotte on social media after learning how she had persuaded four global firms to gift medical cannabis to severely epileptic children awaiting NHS funding.
So far, Harry and one other child are benefiting from Charlotte’s campaigning.
The mums hooked up on WhatsApp and Skype – and now the Sunday People has brought them together.
Charlotte said: “I feel humbled I’ve been able to help Marie, Harry and her husband. It’s heartbreaking for a family to have to pay out up to £1,500 a month for medicines.
“It shouldn’t be happening. £1,500 worth lasts four weeks, and on top of that you have to pay for the private prescription and a mandatory video call with the consultant.”
Harry has severe refractory epilepsy that cannot be controlled by licensed anti-epileptic medication.
He was having up to a dozen seizures a day, some life-threatening. The family started using cannabis oil – CBD – two-and-a-half years ago and it cut seizures to one or two a week.
Before that he was unable to walk or go to school. But the treatment came with a monthly bill of £995 for Marie and her landscape gardener husband William, 44.
The couple spent more than £30,000 over two-and-a-half years, borrowing from family to cover the cost.
“When it’s your child, you’ll do anything,” said Marie.
“Before the CBD Harry was in a vegetative state on the floor, we had to drag him from room to room on a duvet.
“When he had seizures at night he’d end up face down and at risk of suffocation. We had to have a camera linked to our phones as an alarm.
“His seizures left him exhausted so he’d miss 30% to 40% of school.”
The family applied for medical cannabis on the NHS six months ago. Harry is still awaiting an appointment.
Charlotte’s son Billy had 300 seizures a day at the family home in Castlederg, County Tyrone, until he started taking cannabis oils.
She said: “You can’t get these drugs routinely on the NHS even though they are legal.
“Families must apply for NHS funding via the Refractory Epilepsy Specialist Clinical Advisory Service.
“It can take eight months and isn’t always successful.
“Oil makers need to do trials to improve the case for cannabis. The NHS wants to work with them but none have come forward so far.
“Meanwhile we want more manufacturers to provide free treatment and not take thousands from vulnerable parents so they can keep their child alive.”
Charlotte De Lima, of charity Young Epilepsy, said: “No parent should have to pay for their child’s prescribed epilepsy treatment if an NHS epilepsy specialist clinician believes it to be in the child’s best interests.”
Charlotte has told how a doctor once advised giving Billy a fatal shot of morphine at four months old to end his “short and painful” life. That only spurred her on to be a crusader.
She said: “I’ll never stop supporting parents who need medical cannabis for their child but can’t afford to pay.”
The Department of Health said: “We take an evidence based approach to ensure unlicensed cannabis-based treatments are proved safe and effective before they can be considered for rollout on the NHS more widely.”
