Last week, we wrote about seven-year-old Sophia Gibson, from Newtownards, County Down, in Northern Ireland, who suffers from a severe form of epilepsy called Dravet syndrome. Because of her condition, which is caused by a rare genetic dysfunction of the brain, the girl experiences frequent and dangerour epileptic fits.
On July 10, Sophia was placed in a drug-induced coma in the intensive care of a hospital in Belfast following a really bad seizure.
Sophia’s family had previously taken her to the Netherlands, where she was administered medical cannabis. According to Sophia’s mother, Danielle, cannabis oil relieves Sophia’s symptoms and significantly reduces her seizures.
However, back in Northern Ireland, the girl did not have access to cannabis oil. The family has applied with the special cannabis panel set for a license to allow Sophia legal access to her medication.
It was while waiting for her license that Sophia had an hour-long traumatic seizure, resulting to her being placed in an induced coma last week.
On Friday, Sophia has been granted the first ever long-term medical cannabis license in the UK (Northern Ireland is part of the UK). The license granted to Sophia is for the use of whole plant medical cannabis oils under the Bedrocan brand, which will be prescribed by her doctors through the National Health Service (NHS).
The decision to grant Sophia the much-awaited license was made based on the recommendation of a panel of medical experts. The panel was set up earlier this year by the Home Office after several high-profile cases of kids with severe epilepsy being denied access to medical oil to control seizures. The panel was formed to look into cases related to cannabis license applications.
Danielle said that the Home Office’s decision is live-saving and life-changing for her daughter. She noted, though, that “no family should have to fight this hard and for so long for something that is obviously beneficial.”
According to her, their fight for medical cannabis license has been exhausting, but it has resulted to immense relief. She thanked those who have showed their support for Sophia and for their family.
“The years of battling have paid off finally,” she added.
Danielle also expressed hope that the decision for Sophia would pave the way for
others who need medical cannabis. She is hoping that others in similar situations would now be able to access the same treatment in the UK and would not have to uproot their lives to go abroad.
She promises that they will continue to work in order to make medical cannabis accessible for others and to educate people on the use of cannabis so that there is no more stigma or misconception surrounding it.
Danielle thanked Peter Carroll of the End Out Pain campaign, as well as her MP Jim Shannon, who has supported their plight.
According to Carroll, the decision would give hope to hundreds of other patients who need access to the drug.
He pointed out, though, that getting Sophia’s application through has shown that, for other families to benefit, there should be an urgent reform in the way the panel operates.
Carroll also said that the emphasis on the need to demonstrate that medical cannabis has worked is very unfair as it implies that the patient must first suffer the expense of traveling to a country where medical cannabis is legal before they can make an application.
According to Carroll, it has been an honor to support the Gibson family. Their dignity under extreme anxiety over such period was remarkable, he added.
He assures that their work to secure the rescheduling of cannabis goes on.