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Parents say cannabis oil could save their one-year-old son from seizures

Baby Jace's parents are waiting for a cannabis oil licence to see if will help improve his condition. Credit: ITV Cymru Wales

The family of a one-year-old boy who suffers with severe seizures on a daily basis say they are "running out of treatment options" for their son.

Baby Jace's parents are waiting for a cannabis oil licence to see if will help improve his condition. His mother Megan Webster and father Chris Newton-Sealey say they fear he will not live out his toddler years.

Jace Newton-Sealey from Swansea was born with a very rare genetic disorder - Non-Ketotic Hyperglycinemia (NKH) - which leads to abnormally high levels of a molecule called glycine and causes serious health problems.

As the toddler's body is unable to break down this amino acid, glycine builds up in his blood and the fluid around his brain. This affects his organs and brain and can cause him to have seizures.

Megan and Chris believe cannabis oil, which contains an anticonvulsant property, could give Jace a chance at life with fewer seizures. At the moment a strong enough product is not available for the toddler.

Megan and Chris believe cannabis oil could give Jace a chance at life with fewer seizures. Credit: ITV Cymru Wales

You can get it from shops and online but you've got to be careful.

You don't know what's in it and you don't know the strength of it either so you might buy it thinking it's the right thing but it might be really weak and not do anything.

– Jace's parents
The Royal College of Nursing Wales argue cannabis should be legalised when you consider what's already available on the NHS. Credit: ITV Cymru Wales

And there are those in the healthcare world who argue cannabis should be legalised when you consider what's already available on the NHS.

For example, diamorphine. Diamorphine is heroin and we prescribe that for patients who have had myocardial infarction. It's had a lot of testing you can control the dose that's given to patients and there's a lot of research behind it. Therefore we are saying that in order to deliver a symptom free condition to patients we have to have cannabis legalised.

– Tina Donnelly, Royal College of Nursing Wales

A Home Office spokesperson said they do not comment on individual cases but sympathise with the families who have been facing desperate situations as they try to find treatment. They said: "That is why the Government has taken action, creating an expert panel to review individual medicinal cannabis licence applications."

In response to growing pressure, Home Secretary Sajid Javid has announced a review of the medicinal use of cannabis but in the mean time, people face a lengthy wait to see if they can be granted permission to use the substance.