A desperate mum has launched a new petition calling for NHS access to medical cannabis, which she believes could save her son.
Sarah Sugden, a 29-year-old single mum to Isaac, aged three, has launched a petition in a desperate attempt to access medical cannabis for him.
Isaac was diagnosed with the rare gene mutation, MED12, in 2020 and is the only one in the UK known to have his specific variation.
MED12 related disorders primarily affect boys and can cause epilepsy alongside developmental delay, dysmorphic features and behavioural problems.
Isaac currently experiences up to 80 life-threatening seizures a day and his doctors are said to have warned Sarah that he may not live longer than 18 months without intervention.
He is now on his 13th conventional anti-epileptic and has tried alternative options such as the ketogenic diet.
Sarah says her son is “trapped in his own head day after day” and doesn’t respond to anything.
Having done her research and spoken with many other parents of children with similar conditions, Sarah is confident that medical cannabis could help him. But despite it being legalised in 2018 she is unable to access the medicine either privately or through the NHS.
Only three prescriptions have been issued through the NHS in almost four years, and the only remaining paediatric prescriber in the private sector has now closed their books due to demand.
Around 80 children with refractory epilepsy currently have private prescriptions for whole plant cannabis, and many of these patients have seen huge improvements in their overall seizure reduction and quality of life.
Sarah told Cannabis Health earlier this year that she is considering travelling overseas, feeling that it is her only option to access it for Isaac.
“My gut tells me it’s what he needs,” she said.
“Nothing else has worked and I need to know I have tried everything.
“It would be great if it stopped the seizures, but it’s about giving him a better quality of life and enabling him to be a bit more cognitively aware, because at the moment he’s just existing, he doesn’t live.”
Sarah’s petition which has several hundred signatures already, states: “We are at breaking point. We simply want the chance to try medical cannabis which has been life transforming for other children with similar extreme forms of epilepsy.
“We need the system to change. How can a drug that is prescribed to 3 children on the NHS not be accessible to all that need it and how can private clinics be blocked from accepting new patients?
She adds: “I have started this petition to say my child matters, his health and his happiness matter. This medicine can’t just be accessible to some and not to all.