A mother whose son suffers from up to 300 seizures a day has joined calls for cannabis oil to be legalised to treat the disorder.
Emma Smith, 34, is calling for help for her five-year-old son Oscar who has drug-resistant myoclonic astatic epilepsy.
The condition – also known as Doose syndrome – started around his first birthday and causes the youngster to suffer seizures likened to an electric shock.
Oscar has been on a range of medication to try to control his seizures, but nothing has helped to stop the problems as his disorder also builds up resistance to the medication quickly.
Mrs Smith gave up her job as a learning disability nurse to care for Oscar when he was diagnosed.
She cares for Oscar and his younger brother Alex, four, with her husband Jason, 46, an industrial floor layer who often has to work away from home.
Speaking about Oscar’s condition, Mrs Smith said: “We have not tried cannabis oils.
“Oscar is waiting at the moment to see if he will go in for surgery, but doctors have told us it would not stop the seizures, just reduce the frequency.”
Mrs Smith has spoken out as calls for cannabis oil come after the Home Office intervened to give a 20-day licence to youngster Billy Caldwell to use the drug to treat his epilepsy.
Billy, 12, also suffers from epilepsy and was stopped by UK Border Force officials with his mother Charlotte Caldwell last week as she attempted to bring a year’s supply of the drug, prescribed by a Canadian hospital, into the country.
The drug is believed to cost around £40 a day for treatment.
Mrs Smith added: “If there is something out there which is proven to work for seizures resistant to medication, why not try that first before the trauma of surgery and medication which we don’t know will work.
“His father and I have discussed taking him abroad for cannabis oil but we believe we should be able to access it here in the UK, safely with the supervision of doctors.
“The oil should be available to use legally for medical purposes. I don’t want to take him abroad to get medication which we then can’t bring home anyway.”
Mrs Smith is in a number of groups with parents in similar circumstances to her family and said there is a groundswell of support for legalising cannabis for epilepsy treatment.
She added: “I speak to parents from all over the UK and in America – where it is available – and support is building and gaining momentum.
“People want the opportunity to help their children, and I think Billy’s case is a landmark moment as it has been recognised that cannabis helps, you cannot question it.
“Billy’s mother, Charlotte Caldwell, has been incredible and has led the way for all of us to try and help our children.
“Every individual case is different but I just want a generalised legalisation so each family can make the decision.
“Each unique case deserves to be able to have the option to use the oil.”
Mrs Smith, from Bradford, West Yorks., said she hopes the Government makes a decision soon, “as there are so many children that could benefit”.
She said: “With Doose Syndrome it’s very difficult to treat and does not respond to medication.
“I would like to see the Government give families with children like Oscar and Billy the chance to at least try it before resorting to surgery to give these young children the chance to live well.”
After the Government’s landmark decision to grant permission for Billy Caldwell to be treated with cannabis oil, Mrs Smith has called on the Government “to give children an opportunity to get treatment that has been proven to work” to help her son.
The action was triggered following the Government’s decision to grant a 20-day licence to the family of Billy Caldwell.
The licence allows the family to gain access to the oil, which contains the currently banned Tetrahydrocannabinol (THC).
It is prohibited in the UK but widely allowed elsewhere.
Billy was initially rushed into hospital after his drug was confiscated – but the Home Office then backtracked and approved a 20-day licence.
His mother Charlotte said his seizures are reduced when he takes the oil and has called for it to be freely available.
The seizures suffered by Oscar result in numerous ‘jerks’ and ‘absences’ each day and on his last hospital admission he had around 300 seizures in 11 hours.
Despite his condition, brave Oscar still attends a state school as much as possible where he receives one-to-one support.
Home Secretary Sajid Javid has announced a review of the medicinal use of cannabis.
Mr Javid announced the move in the wake of a series of appeals from parents who want their children to be able to access medications which can alleviate epilepsy and other illnesses.
However, he stressed it would remain illegal for recreational use, despite a call from Lord William Hague to legalise the drug.
Simon Stevens, chief executive of NHS England, has also urged caution over cannabis.
He said there are “clearly very strong reasons” for a clinical review into prescription of cannabis-derived compounds for certain medical conditions.
However, he stated: “I think it’s very important as a country that we don’t confuse this debate around specifically prescribable products for certain medical conditions, with a much more generalised debate around the decriminalisation or legalisation of marijuana, without at the same time reminding ourselves that there are some genuine health risks there.”
