‘Boisterous’ Ben Griffiths, 10, used to suffer up to 300 seizures a day after being born with brain damage and suffering with cerebral palsy and intractable epilepsy.

The family's life revolved around Ben’s health and constant trips to hospitals due to the injuries he would suffer during his fits.

Now, after being privately prescribed Bedica, a THC based medication, along with Bedrolite, a CBD based medication, Ben’s quality of life has sky-rocketed with him only suffering up to 10 seizures a day and has had one day seizure free.

Although the medicine doesn’t cure Ben’s condition or change that he is still severely autistic with complex needs, it improves his symptoms and severity of his condition dramatically allowing him to live a happier life.

Ben's mother, Joanne Griffiths, 43, of Much Hoole, can’t believe the difference this has made on Ben’s life: “It’s absolutely wonderful, it's not a cure, he’s still got epilepsy, but he’s had his first seizure free day.

“If you had seen pictures of him in hospital, he was just miserable, he looked like his whole body was shutting down, like he couldn’t take anymore.”

Ben’s original clinician on the NHS always wanted to prescribe the medication for Ben, however he filled out the application forms for the expert panel last year which was blocked by the trust at the time.

Before Ben got prescribed his new medication, the family spent three weeks in Alderley Hospital over Christmas when Ben was suffering with over 300 seizures a day.

However, now the family are finally able to spend time together, something that was impossible before.

“He’s doing things that kids should be doing, going to Preston North End games, going to trampoline parks, things that he couldn’t do whilst he was having 300 seizures a day.”

“He’s really happy, and that’s the difference.”

Ben spending some time on the beach with his dad

The Griffiths family have met nothing but barriers in getting the medication Ben needs, leaving them no option but trying private health care at The Portland Hospital.

This was a success, with Ben’s private consultant there managing to organize the treatment Ben needed to reduce the number of seizures he suffers a day and severity of his condition. 

Ben’s prescriptions currently cost the family £6300 a month, with Ben needing 11 bottles of Bedrolite and two bottles of Bedica, however, they are building up his dose and he is currently only at half of the full dose he may eventually need.

The astronomical cost has left the family with no other choice than set up a fundraiser to be able to rasie the money needed that could keep their son alive. 

The courageous mother added: “We are having to try and fundraise to keep it going but unfortunately, it's becoming unsustainable.

“There are families that are selling their homes to keep their children well.”

Information of medication Ben has been prescribed

Bedica® is the brand name for the indica cultivar Cannabis sativa L. ‘Talea’. It has been developed in response to mounting evidence of a real difference in the effects of sativa and indica types. Bedica® contains a high amount of the myrcene terpene, which is known to have a calming effect. Bedica® contains 2% THC with less than 1% CBD. 

Bedrolite® is the brand name for the cultivar Cannabis sativa L. ‘Rensina’. Bedrolite® is Cannabis sativa L. ‘Rensina’. A so-called CBD-only product, with less than 1% THC and 9% CBD. The virtual absence of THC means it does not have psychoactive properties. Bedrolite® has become the preferred choice of a number of patients with severe, intractable (untreatable) forms of epilepsy. 

Joanne is an active member in a group, End Our Pain, and travelled with the group to Number 10 in London to deliver Boris Johnson a handwritten letter about the importance of their children gaining easier access to their medication.

Many of the children have been able to gain access to the medicine privately however, due to the price, it is not sustainable for the families, who have collectively spent £231,000 on the medication, forcing them to campaign.

“All the children on this are doing really well. Ben’s doing absolutely fantastic, it’s just been a life changer for us.”

“That's all we want, is our children to have the best quality of life that they can with the conditions that they live with and we don’t think that’s too much to ask.”

Murray, a child from Scotland suffering a similar condition, has had over 100 days seizure free on the same medication showing the Lancashire family what they can look forward to in the future.

“Murray was like Ben, having drop seizures and injuries. He’s now a normal little boy running around and playing with his siblings and is happy.”

Joanne continues to campaign and fundraise to keep her son happy and healthy, something that many families take for granted, but something that doesn’t come quite so easily to some.