Northern Ireland news

Family battle for medical cannabis as Sophia (7) fights for life

A little girl with severe epilepsy is fighting for her life in a Belfast hospital just days after health chiefs revealed they had applied for a licence to treat her with medicinal cannabis. The family of Sophia Gibson last night spoke to health correspondent Seanín Graham about their fight to save their daughter and secure her life-changing medication

Seven-year-old Sophia Gibson, who suffers from a rare form of epilepsy. Picture by Hugh Russell.
Seanin Graham

SOPHIA Gibson should have celebrated her seventh birthday with a party and cake two weeks ago. Instead, the teddy-obsessed little girl, who suffers from a rare form of epilepsy, started experiencing multiple seizures and was nursed by her parents throughout the day and evening.

Yesterday the Clifton Special School pupil suffered a catastrophic seizure and was rushed to hospital.

Last night she remained on life support at the Royal Belfast Hospital for Sick Children. 

Her distraught parents Danielle Davis (30) and Darren Gibson (32) have battled to get the cannabis-based medication for the past year to give their daughter a quality of life. 

They have repeatedly warned health officials that Sophia’s life was at risk.

Speaking to The Irish News last night Ms Davis said her little girl’s condition had deteriorated rapidly.

“I was in another room today and Darren shouted ‘seizure’,” she said.

“I ran in and managed her as I always do but she became much worse. We rushed her to the Ulster Hospital in Dundonald and she was later transferred to ICU in the Royal.

“She is on life support now with a ventilator. We are devastated. I don’t know what’s going to happen to her. She has always rallied before but this is the worst I’ve seen her.” 

Billy Caldwell's fight for medicinal cannabis has brought the issue to prominence in recent weeks. Picture Matt Bohill.

Three months ago the couple took their little girl to Holland where she was assessed by a consultant neurologist who prescribed cannabis oil with THC – a legal substance regulated by the Dutch government but which was illegal in Northern Ireland. 

The family were able to stay in the Netherlands for six weeks to monitor how Sophia reacted to the medication following a massive £20,000 fundraiser in Ards.

They described the experience as “life-changing”.

“For the first time since she was diagnosed as a baby, we began to see a significant reduction in Sophia’s seizures,” Ms Davis said.

“She was able to play in the park and even kick football with her two-year-old brother, Mason. We were just like a normal family.

“But at her first day back at Clifton Special School she had a nine-minute seizure. We got a phonecall to say that it was a different type of seizure, her pupils were massive and she was retching.”

Following queries by The Irish News to the Belfast trust in relation to her parent’s concerns about delays in their daughter’s case, a trust spokeswoman late last week confirmed that doctors have now applied to the British government for a licence to access medicinal cannabis.

“Belfast trust is committed to doing all we can to provide safe, effective and compassionate care for all our patients. We are doing all we can to support the Gibson family to ensure their daughter receives the care she needs,” the spokeswoman said.

“Our clinicians have submitted an application to the expert panel established by the UK government for consideration of a licence for Sophia Gibson.”

Ms Davis began detailed research of cannabis-based medication after building a close relationship with the mother of Cork toddler Tristan Forde, who was the first child in Ireland to be legally treated with the drug in December 2016. Tristan suffers from the same condition as Sophia – known as Dravet Syndrome – which can cause up to 150 seizures a day. 

Tristan Forde from Cork pictured with his mother Yvonne Cahalane in 2016. He became the first child in Ireland to receive a licence for cannabis oil.

She is also in contact with Hannah Deacon, the mother of Alfie Dingley (six) from Warwickshire, who also was treated in the Netherlands.

Alfie and Castlederg boy Billy Caldwell (12) were at the centre of a high-profile campaign that led to the granting of the first UK licences for cannabis-based medication last month by Tory home secretary Sajid Javid.

Billy, who suffers from epilepsy and is also autistic, has been allowed to receive the treatment in his home. 

Since Sophia’s parents learned of the Belfast trust application for a special licence, they say they still have not received any communication from the Home Office – at a time when she is fighting for her life.

“We have had a year of stalling and waiting following our previous application to the Home Office in London for a long-term licence.

“We have been working closely with the Department of Health for over a year now and all the necessary paperwork has been completed. We can’t have any further delays with this new application to the expert panel of doctors,” Ms Davis said.

Sophia, who is on six different medications a day, was also at one stage prescribed a benzo-drug, which is said to be highly addictive, resulting  in her having to be weaned off it.

Alfie Dingley and his mother Hannah Deacon. Alfie suffers from a severe form of epilepsy and has received a long-term licence for cannabis oil.

“If she had received the prescribed medication she got in Holland at home, her condition may have been managed better,” the heartbroken mother said.

Ms Davis appealed to the panel, which was set up as a result of the Dingley and Caldwell cases and is chaired by the north’s chief medical officer, Dr Michael McBride, to act swiftly.

“I am urging them to deal with Sophia’s case as quickly as possible given that she is so ill,” Ms Davis said.

“Sophia is such a loving and happy wee soul who is so caring. It’s heartbreaking.”

"For the first time since she was diagnosed as a baby, we began to see a significant reduction in Sophia's seizures," said Ms Davis.

"She was able to play in the park and even kick football with her two-year-old brother, Mason. We were just like a normal family.

"But at her first day back at Clifton special school she had a nine-minute seizure. We got a phonecall to say that it was a different type of seizure, her pupils were massive and she was retching.

"Sophia is such a loving and happy wee soul who is so caring. In her class she hugs everyone and encourages them. Two of the children cannot speak yet she just cuddles them and says 'come on'...but now the seizures are getting more extreme and frequent, we don't know what's going to happen from one day to the next."

Following several queries by the Irish News to the Belfast trust following her parent's concerns about delays in their daughter's case, a trust spokeswoman confirmed that its doctors have now applied to the British government for a licence to access medicinal cannabis.

She said: "Our clinicians have submitted an application to the expert panel established by the UK government for consideration of a licence for Sophia Gibson.

"Belfast Trust is committed to doing all we can to provide safe, effective and compassionate care for all our patients. We are doing all we can to support the Gibson family to ensure their daughter receives the care she needs. "

For Sophia's family, the news is welcome but they are have also expressed "frustration" with the level of bureaucracy around their previous application to the Home Office in London for a long-term licence.

"We have been working closely with the Department of Health for over a year now and all the necessary paperwork has been completed. Our fear is around any further delays with the new application as Sophia's condition seems to be deteriorating," Ms Davis added.

"She is currently on six different medications a day that aren't working. At one stage they had her on a benzo-drug which is highly addictive and we had to wean her off it. If she could get the prescribed medication she received in Holland it would help control things."

Ms Davis appealed to the panel, which was set up as a result of the Dingley and Caldwell cases and is chaired by the north's chief medical officer, Dr Michael McBride, to act swiftly.

"I am urging them to deal with Sophia's case as quickly as possible. The seizures have become so prolonged that her life is now at risk. It is heartbreaking."

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