“It is soul-destroying” – Mum of toddler with rare condition says medical cannabis is his only hope

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A mum whose three-year-old son has a rare condition, is faced with travelling abroad to access medical cannabis, which she believes could help him.

Sarah Sugden, a 29-year-old single mum, says travelling abroad to access medical cannabis for her son might be her only option, due a lack of doctors willing to prescribe it in the UK.

Isaac, three, was diagnosed with the rare gene mutation, MED12, in 2020. 

MED12 related disorders are a group of disorders that primarily affect boys and can cause epilepsy alongside developmental delay, dysmorphic features and behavioural problems.

Isaac is the only one in the UK known to have his specific variation.

Isaac could laugh and interact before the first seizure hit

Although the condition would not usually shorten life-expectancy, he experiences around 80 seizures a day which can be life threatening. Doctors have told Sarah that due to the severity he is at risk of SUDEP and may not live more than another 18 months.

“I always knew something wasn’t right because he didn’t meet his milestones, but before he turned one, he could laugh, he could watch TV. He had just started to learn to army crawl when the first seizure hit,” says Sarah.

“Now it’s like Groundhog Day, every day is the same. You can’t plan anything for him, or do anything with him, he’s either sedated from medication or manic and distressed about having another seizure.

“As a parent it is soul-destroying because you can’t help him.”

Since he began having seizures at the age of two, Isaac has tried 13 anti-epileptic drugs – none of which have managed to get the seizures under control – and the ketogenic diet which caused him to suffer infantile spasms.

As he is not suitable for surgery or the vagus nerve stimulator, he is running out of treatment options on the NHS.

“Once the anti-epileptics don’t work you are just abandoned,” says Sarah, a healthcare assistant in a GP practice.

“We’ve been told there is no other option for him on the NHS.”

Sarah has been researching medical cannabis since Isaac’s diagnosis, but so far his doctors haven’t been supportive.

“As soon as the first couple of antiepileptic drugs didn’t work, we started looking at medical cannabis as an option but it was shut down by his consultants,” she says.

“Our consultant dismisses everything, he says medical cannabis isn’t the wonder drug everybody thinks it is, and the NHS said no to Epidyolex because he doesn’t have one of the two conditions it is approved for.”

Isaac currently has “no quality of life”.

Even though medical cannabis was made legal in the UK in 2018, only three prescriptions have been issued on the NHS since then.

Around 150 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. 

A Drug Science study reported that medical cannabis reduced seizures by 86 per cent in 20 children with refractory epilepsy, with no significant adverse effects.

Through her research and speaking to other parents, Sarah believes that medical cannabis could help Isaac too. The side effects of the anti-epileptic drugs, and the impact of the seizures, have left him with little quality of life.

“My gut tells me it’s what he needs,” she says.

“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.”

She continues: “He is trapped in his own head day after day, he just sits and stares. He doesn’t respond to anything, he doesn’t play with toys. He is relying on people for everything.”

Only one paediatric neurologist is prescribing privately for children in the UK and he is not currently taking on new patients.

Sarah says if nothing changes she will have no choice but to try to raise the money to take Isaac abroad to access the treatment.

“The doctors have told us that in 18 months, Isaac probably won’t be here, so we don’t have a lot of time to wait around. Our only option is going to be to seek medical help abroad,” says Sarah.

“I’d have to fundraise, but we don’t have any other option.”

She adds: “It could all change if doctors were willing to prescribe.

“At the moment, I feel like my child doesn’t matter. It feels like it’s acceptable to let children with epilepsy die unnecessarily.”

Blocks to access

Matt Hughes, co-founder of Medcan Support, a charity which supports the families of children with epilepsy, said the British Paediatric Neurology Association (BPNA) guidance, which advises against the use of whole-plant cannabis in children, has made it difficult for clinicians to prescribe. 

“It’s really sad to see that parents are once again looking to go to Holland and Canada and explore access abroad, when it’s been legal here in the UK for approaching four years,” he told Cannabis Health.

“We had made progress but that’s now being halted, and that’s predominantly because of the BPNA guidance, which has been a roadblock to access, not just through the NHS but now the private sector as well.”

The guidance states that there is “no evidence” for the safety and efficacy of medical cannabis products, along with “concerns” about the effect of exposure to THC on the developing brain.

As well as travelling abroad, families are also considering accessing cannabis through the legacy market, which comes with its own risks and could cause more harm, says Hughes, whose son Charlie has a private prescription for medical cannabis.

“Parents and families are going to go to any length to access a medicine which is legal, which has evidence and which three children are prescribed on the NHS,” he continues.

“The BPNA should be protecting and supporting families. No, we don’t have the data they would like to see, but there is data out there that shows that it’s relatively safe and efficacious, so why not support that individual, even within the private sector. It is much much safer than leaving a parent to explore this on their own, with no clinical guidance, relying on other parents for advice and potentially causing more harm by using illicit unregulated oils.”

Hughes urged clinicians to access resources such as the Medical Cannabis Clinicians Society and Drug Science to learn more about medical cannabis.

He adds: “There are lots of resources now, in the UK and around the world where clinicians can sign up for very little money, or even free to learn about cannabis and to understand about the endocannabinoid system.”