The family of a 19-month-old in a race against time to protect their son from a life-threatening condition have been denied access to medicinal cannabis they think could help him.
Charlie Hughes, whose development is stuck at that of a six month old, suffers from between 40 and 50 seizures a day.
He was diagnosed with West syndrome, or infantile spasms, at just 10 weeks old. The condition is a severe type of epilepsy and just 400 children in the UK have it.
Charlie has had clusters of spasms daily since January 2018, and been through piles of medications to try and control them.
His mother Ali Hughes, 37, said: 'Initially his seizures were controlled through a number of steroids but when weaning off the steroids the seizures came back and since then we've not had them under control.'
Charlie's seizures are not what is usually imagined with epilepsy, where the body fits. Instead his spasms cause his limbs to stiffen and he suddenly bends forward. His father Matt Hughes said he often bangs his head so has to wear a helmet most of the time.
'He has around 40 to 50 a day on average,' Mr Hughes, 39, said. But because his brain has not fully developed, it is feared it could be harming him every time he has a spasm.
Mr Hughes said: 'Life has been a complete rollercoaster, it's clinging onto that hope that the next thing will work and control the epilepsy, but when it fails, and the list of the next thing gets shorter that hope slowly fades.
'Our current situation is that we have tried all primary anti epileptic drugs and a cocktail of secondary anti epileptic drugs. We've also tried a ketogenic diet which failed.
'We are constantly grieving for Charlie and have no idea what his future holds. All we know is the prognosis is better the quicker the epilepsy is controlled.'
The couple, who live in Thorpe St Andrew, then turned their attention to medicinal cannabis, which was legalised in the UK in November.
But Mr Hughes said: 'We have asked for a prescription for Epidolex or full extract cannabis and we've been told it's too expensive and Charlie doesn't fit the criteria for this medication.'
Despite the change in the law last year, the British Paediatric Neurology Association's guidelines do not recommend the prescription of medicinal cannabis that contains THC.
And just six patients have been given medicinal cannabis since it was legalised, and all on private prescriptions.
Meanwhile, Mr Hughes, an IT manager, said his son was suffering.
'Because we've not been able to get it under control, his development is behind by about a year,' he said.
'He's not crawling, he can't feed himself, we have to do all that for him.'
But their consultant had said if the seizures could be brought under control, Charlie could make a full recovery and catch up, as he had not yet suffered any brain damage.
But Mrs Hughes said: 'The longer it goes on the more chance it is of developing into a life-threatening condition.'
The couple have been in touch with Hannah Deacon, the mother of Alfie Dingley, a youngster from Kelinworth, Warwickshire who has severe epilepsy.
Ms Deacon fought and won a battle to have Alfie prescribed medicinal cannabis, and he has now gone from having 400 seizures a day to attending mainstream school, learning to ride a bike, and starting to swim.
But she said the guidelines were a 'real blow' to other families and introduced Mr and Mrs Hughes to the End Our Pain campaign.
The campaign has been backed by Liberal Democrat North Norfolk MP Norman Lamb and South Norfolk MP, the Conservative's Richard Bacon.
On March 19 Mr and Mrs Hughes will join 15 other families in the group at Westminster to lobby MPs, which coincides with an inquiry by the Health and Social Care Select Committee into the availability of medical cannabis.
They will then present a petition to 10 Downing Street.
Mrs Hughes said she was 'dismayed and angry' when they were denied the prescription.
'They are putting children's lives at risk and it's disgusting,' she said.
'Children have been written off, you have to try for your children.'
End Our Pain Campaign spokesperson Peter Carroll said: 'The government has managed to snatch defeat from the jaws of victory.
'The home secretary took the bold and decisive step to legalise access to medical cannabis, but the health secretary has implemented the policy in a way that effectively means patients are denied access.
'This affects many thousands of patients with a range of conditions. But its particularly heart-breaking for the likes of the families gathering in Westminster on March 19. These are families with severely ill children.
'It's unforgivably cruel that they have had their hopes raised and now dashed. Many of them are having to fundraise to take their children on lengthy and costly trips to Holland to get the treatment that is now legal in the UK.'
Sir Mike Penning, co-chair of the all-party parliamentary group (APPG) on medical cannabis under prescription said: 'Every one of these cases is a personal tragedy.
'These inspirational families already have enough to cope with caring for a desperately ill child. They should not be passed from pillar to post and then be denied access to what is now a legal medicine in the UK.
'They are at breaking point. My heart bleeds for them. There is a significant body of parliamentary opinion that will not rest until this situation is sorted out. If this isn't resolved soon, I've no doubt that some of these families will be forced to bring in the medicine themselves. If they do that, I and colleagues will stand with them.'
MP Tonia Antoniazzi, fellow co-chair of the group, added: 'Patients and families were given so much hope when the law changed in November. Now all we see is despair.
'All of the families have tried many powerful pharmaceutical drugs over the years, all with severe side effects, to help stop their children's seizures. They haven't worked.
'The home secretary changed the law quickly. Now we need to ensure that a policy is put in place by the Department of Health and Social Care that actually lets patients get access. For these patients in particular, it's a last hope of relief'.
An NHS England spokesman said: 'As with any new medicine where there is a need to build the evidence base, the NHS's normal medicines governance systems apply and are being used to support good clinical practice and safe and effective prescribing for patients whilst the evidence base continues to be developed. The decision to prescribe medicinal cannabis is a clinical decision for specialist hospital doctors, made with patients and their families, to determine the most appropriate medication or course of treatment for an individual patient.'
A Department of Health and Social Care spokesman said: 'The government has delivered on its promise and specialist doctors can now prescribe cannabis based medical products where there is clinical evidence of benefit.
'The decision to prescribe cannabis for medicinal use rightly rests with specialist doctors.
'To support doctors prescribing these products, we have asked the National Institute of Health and Care Excellence (NICE) to develop additional clinical guidelines and are working with Health Education England to provide additional training, as well as promoting research to strengthening the existing evidence base.'
• To find out more about End Our Pain, click here or search for the group on Facebook or Twitter. To sign the petition calling for better access to medical cannabis, click here.
• Have you been denied access to medicinal cannabis? Email geraldine.scott@archant.co.uk
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