Daily Mirror (Northern Ireland)
MISSION OF MERCY TO SAVE SOPHIA
Parents risk trip to Netherlands in a bid to stop 6yr-old’s seizures
about giving our daughter a better quality of childhood.
“Her syndrome is so rare there is little known about it and we constantly have to explain to medical staff exactly what her syndrome is. Sophia is having more new aggressive seizures which resulted in her dropping during PE at school and we had to go to A&E as she had had an injury at the back of her head.
“And on the Monday she had to be blue-lighted to hospital as she had another drop seizure which resulted in another head injury. Sophia has
CO DOWN YESTERDAY
missed so much school this year due to being unwell and seizure frequency increasing and has currently been off for the past fortnight.
“The mortality rate for Dravet patients is increased and all we want to do is get this medication to significantly reduce her seizures so she can enjoy her life while she is here.
Danielle said: “The cbd oil in shops and chemists will not help Sophia as we need the illegal limit of THC.
“Two families in Southern Ireland got a licence for their children who have the same syndrome as Sophia and have successfully reduced their children’s seizures.
“Another family in England have received a three-month research licence to try their son on the same medication.
“Our government needs to realise this is all very closely monitored by the Dutch government so each batch is the same.
“It’s not as simple as going to your local GP for a prescription – it’s a case of either a research licence or a personal import licence and involves many steps when applying and being approved through the UK government.
“We need a doctor within the UK to sign the licence off and monitor Sophia’s bloods while she is on it.
“We can’t sit any longer and watch our daughter go blue round the mouth and her face go grey praying these seizures don’t take her life.
“Our two-year-old son now knows when Sophia takes a seizure and asks, ‘Is the ambulance man coming?’.
“She has to get her bloods done every six months for liver function, another drug she is on the main sideeffect is anorexia and the other drug causes behavioural and withdrawal symptoms in her personality.
“We spoke with Sophia’s consultant last year to wean her off one of her meds, which is a benzo, to be told we would need a 16-week programme as it is addictive and to reduce withdrawal symptoms.
“Sophia was on this drug for four years. Once off this drug she was more upbeat and lost a lot of the weight the other drugs made her gain.
“We are in the process of changing Sophia’s consultant as there have been many failures in our daughter’s care not just with trying to get medicinal cannabis but other protocols we feel have not been followed.
“We have backing from local and UK politicians, councillors and health officials to try and get this legally for Sophia.
“We have had so much support from our community and home town and help with fundraising but the costs when abroad will be so expensive that’s why we need everyone to help while we are away.”
To help Sophia’s family raise the funds they need visit www.gofundme. com/helpforsophiasseizures.