A mum terrified of losing her daughter to life-threatening seizures has accused health officials of “breaking her trust” by not providing potentially life-saving medication.
Danielle Gibson, 30, is so frightened seven year-old Sophia might die in her sleep she lies besides her every night.
Little Sophia has suffered from deadly seizures since she was diagnosed with a severe form of Dravet Syndrome as a baby.
Her parents, from Newtownards, Co Down, are fighting to secure a permanent licence for medicinal cannabis with THC, which they claim keeps their child seizure-free.
Following an 18-month application process, they believed they were on the cusp of receiving the first permanent licence in Northern Ireland for their daughter.
But they are devastated to have been told they now must re-apply through a newly established assessment panel.
Danielle said she feels let down by the latest delay, which she fears could cost Sophia her life.
She said: “We have to stay positive for Sophia and we will not stop until she gets what she needs, but in the back of my mind I am wondering if her body can take any more.
“Every morning she wakes up beside me and I give her a hug because, as morbid as it seems, I am so glad she did not die in her sleep.”
Danielle said they are determined to secure the drug after seeing the benefits of it on Sophia during a recent stay in Holland.
She said: “There is no cure for her syndrome but in Holland we saw a side of Sophia we had never seen before.
“It is the first drug that significantly reduced her symptoms so she could enjoy childhood things like playing in the garden or going to the park without being interrupted by seizures.”
Danielle said the family returned home last month because, after “jumping hurdle after hurdle” they believed the medication would soon be approved.
Within hours of their return, Sophia’s seizures returned and she said they were devastated to hear “the government goalposts had changed once again.”
She claimed: “We did everything asked of us and were told they were working on the very last part of the licensing process, but now we have to throw all that in the bin and reapply through a new assessment panel.
“Maybe we were gullible to build up trust with the Department of Health but we are just ordinary parents who want the best for our child.
“We just want health officials to stick to their word so we can get Sophia back on her medication and let enjoy her childhood.”
“She is battered and bruised by her seizures and every single night she goes to bed I cry and think I should take her back to Holland.
“Then I worry that if we do the Department of Health will just pretend she does not exist. Do they want us over there leaving them alone, or do we stay here and let her keep seizing while trusting the government?
“We have trusted them for so long and Sophia has been clinging on for so long, we hope it comes through in time.”
A Department of Health spokesperson said: “The department continues to work closely with the Home Office on this important issue.
“We completely sympathise with the families who have been facing desperate situations as they try to find treatment. That is why the Home Office has taken action, creating an expert panel to review individual medicinal cannabis licence applications.”
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