A boy with intractable epilepsy has helped to raise funds for charity after seeing major improvements when he was privately prescribed medicinal cannabis. 

Ben Griffiths, 13, walked down Morecambe Bay in October 2022 to raise funds for the charity Intractable UK, alongside some trustees. 

Intractable epilepsy is a neurological disorder that causes reoccurring seizures which cannot be completely controlled by medicine, and about one in three people with epilepsy have intractable epilepsy. 

The charity Intractable UK helps families fund medicinal cannabis which helps children with very profound disabilities and very severe forms of epilepsy. 

Joanne Griffiths, from Preston, is the vice chair of Intractable UK, and her son Ben Griffiths has suffered from intractable epilepsy since birth. 

Mrs Griffiths said: “We started using CBD and his seizures went down from like 120 a day to two.” 

Medicinal cannabis was made legal in the UK in November 2018, when the Home Secretary Sajid Javid listened to concerns from parents of children with these types of conditions. 

However, currently the only way families can provide the medication for their children is to be privately prescribed. 

Funding medicinal cannabis privately can be difficult as the medication can be up to £2,000 for a monthly prescription, made even tougher by the ongoing cost of living crisis.

Mrs Griffiths added: “Any seizure can actually take your life; SUDEP - sudden unexplained death in epilepsy. 

"So, by reducing seizures, you’re reducing the risk of suffering from an incident of SUDEP.” 

Many children with very rare forms of epilepsy can’t currently access medicinal cannabis as there are only two indications which allow it to be prescribed. 

The charity's aim is to give these children their lives back, and it is the first UK epilepsy charity helping children and young adults with privately prescribed medicinal cannabis costs. 

Ben Griffiths will be doing another walk in spring 2023 to continue to raise funds for these families to help give them financial support.