Northern Ireland family in fight to get medication for brave daughter
Family in fight to get medication for brave sophia (6)
All Darren Gibson and Danielle Davis want is for their beautiful little girl Sophia to have quality of life.
The loving parents from Newtownards are travelling to Holland next month as a desperate measure to get their six-year-old daughter the cannabis oil medication they believe she needs.
Sophia Gibson, from the West Winds estate in the town, loves music, dressing up, playing with her school friends and watching TV with her brother Mason (2).
But she has a rare form of epilepsy known as Dravet Syndrome which means she has up to 100 seizures a day.
The most severe attacks put the Clifton School pupil at serious risk of death.
"We love Sophia so much and we feel like we have to do what we can to give her a childhood," mum Danielle told Sunday Life.
After extensive research, Danielle and Darren believe that Sophia needs a higher dosage of cannabis than what is legal in the UK.
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Over the last year, their local community in Newtownards has helped raise more than £20,000 for the potentially life-changing trip to Holland.
On April 2, they will take the ferry from Belfast to Cairnryan before another boat trip from Newcastle to Amsterdam. They will then travel close to the Hague where they will take Sophia to see a GP.
There she will be referred to a neurologist, who will issue a script for medicinal cannabis which they will take to a pharmacy regulated by the Dutch government.
"It's been a lot of research, phone calls, emails and dead ends but we feel like we have to do this for Sophia," said Danielle.
"It's not a case of us giving her something off the street - she's our daughter and she will be closely monitored by health care professionals throughout it."
They believe that the whole plant medicinal cannabis with THC, which is available in Holland, will change Sophia's life.
Danielle said: "This is about giving a little girl the quality of a childhood. All we need now is the right dosage for Sophia's weight and height, but we cannot bring it back legally without an import licence because it's over the 0.2 per cent limit for THC. Over there, it's whole plant medicinal cannabis with THC which is what she needs.
"If we don't get an import licence, we can come home with the legal amount of THC and bring it through customs, but we'll have to lobby the Home Office to either get a research licence for Sophia, or a trial with a UK doctor.
"Stormont officials have told us that if Sophia gets this personal import licence she will be the only child in Northern Ireland with one. So, really it's a case of staying in Holland until we get the licence, or the money runs out.
"This cannabis oil is legal in so many American states and recently the law was changed in Australia too, so we're not trying to give her a drug that is completely unknown. It's legal in other places. This isn't recreational use either, it's medicinal."
Darren added: "To sit and watch your daughter suffer so much, knowing full well that there's medication out there that has been proven to help children like Sophia, breaks my heart every day.
"It feels like we've been hitting brick walls, getting nowhere, and all we want to do, as parents, is to try and give Sophia some sort of quality of life."
In Darren and Danielle's view, the drugs which she is being given at the moment are not improving Sophia's condition and they fear the drugs will only get more powerful as she gets older, leaving her in a vegetative state.
"We have to watch her turning blue and grey round the mouth and think to ourselves, 'Is this the last seizure that is going to take our daughter?'
"We are pleading with the Home Office to issue a licence for Sophia before it's too late."
The couple say that independent councillor Jimmy Menagh has been "supportive from day one" and that the UUP's Philip Smith and DUP politicians Jim Shannon and Michelle McIlveen have been very helpful. However, they feel politicians generally have ignored the need for medicinal cannabis in Northern Ireland.
Darren said: "Why do we have to put a fight up to get our daughter medication that's proven to help other people like her? Why do we have to beg for help? We should have the right, as parents, to give our daughter what we believe is going to help her and we fully believe that this will help her."
Danielle sleeps with Sophia every night to make sure she's safe, and, unlike most six-year-olds, Sophia hasn't been able to have a birthday party because, on the two occasions they've tried, she has taken huge seizures with the excitement. "We don't know how long Sophia has on this earth but we want to make as many memories as we can," she said.
Darren added: "Every single seizure she has has the potential to kill her."
n To find out more, visit www.gofundme.com/helpforsophias