Family life is just so much easier now, say Sophia’s parents as they give her cannabis medicine at home
THE parents of a Co Down girl who requires daily doses of medicinal cannabis oil say they are relieved that their “exhausting and stressful battle” to administer the medication at home is over.
Danielle Davis and Darren Gibson were speaking a fortnight after their three-and-a-half year fight on behalf of their daughter ended.
Seven-year-old Sophia Gibson suffers from Dravet syndrome, a severe form of epilepsy.
The extreme nature of her condition means that she can experience up to 100 seizures a day.
However, a Home Office change in policy means that she can now stop having to travel from her Newtownards home to the Netherlands for the crucial treatment.
Last month Sophia was admitted to hospital after suffering a seizure so severe that she was placed into a drug-induced coma.
Two weeks later she became the first child in the UK to be granted a long-term licence to use of Bedrocan whole plant medicinal cannabis oils, prescribed through the NHS by doctors.
Now a prescription has been issued by Belfast Health Trust and sent to staff in the Ulster Hospital Pharmacy, who then administer it weekly to Sophia’s family.
Reflecting on the breakthrough, Danielle said: “We’re just happy that Sophia can be treated at home and that she received the medication in the first place.
“It has made our family life so much easier as we don’t have to be running up and down to the hospital twice a day for Sophia’s treatment.
“It’s less stressful for her as those trips every day really tired her out.”
But in terms of noticing an immediate difference in Sophia’s condition, Danielle says it’s still very early days.
“Now it’s a case of starting Sophia off on a very small dose again and just building up on that with the consultants involved until we get to a more therapeutic dose that works for her.
“As with any anticonvulsant medication, we won’t see a difference for a while.
“It will be a number of weeks and months before we notice a decrease in the frequency of her seizures.
“When she was treated in Holland her seizures reduced by around 80% and we noticed a definite change in her behaviour so we need to slowly work up to that level again.
“It’s early days but I would imagine that by the start of October we will see that Sophia again who was more alert and focused, talking better and wanting to play.”
Danielle says staff and pupils at Sophia’s school, Clifton Special in Bangor, will notice a difference in her too when she returns there in a couple of weeks.
“Usually my heart is in my mouth at this time of year as Sophia prepares to go back to school,” she said.
“When she would take a seizure an ambulance would have to called by teachers, but this time I’m really excited.”
Home Secretary Sajid Javid recently announced that specialist doctors in the UK will be able to legally prescribe cannabis-derived medicinal products by the autumn.
Those that meet safety and quality standards are to be made legal for patients with an “exceptional clinical need”, Mr Javid said.
As health is a devolved matter, it will require legislative change before it is enforced in Northern Ireland.
Sophia’s father Darren knows his family are very fortunate as the fight for access to medical cannabis oil still goes on for many others.
“I don’t think that we’ve changed history and we were never in this to do that,” he said.
“From the very start the only thing we cared about was getting Sophia some relief from the seizures and giving her a normal childhood.
“People are congratulating us and telling us that we should feel proud which make us feel embarrassed.
“It was quite bittersweet when we finally got the go-ahead after all of the despair.
“While yes, I did want to jump up and down with joy, I know of so many other thousands of adults and children who also need this treatment. We know we have been very lucky.”