A distraught mum has called on the HSE to reimburse her for two rounds of much-needed cannabis oil for her daughter that she was granted a license for back in 2017.
Mary Stephens’ daughter Cassie has suffered horrific seizures everyday since her birth because of tumours on the brain.
At the age of eight, Cassie’s condition deteriorated severely.
The Waterford mum told the Irish Mirror: “When she was about eight she was in a three day seizure which is called Status Epilepticus and when she came out of it she was lost, everything was gone.
“She couldn’t walk, she couldn’t talk, she could barely swallow and a couple of years later the seizures started to get worse and we were running out of drugs.”
Cassie has 14 tumours on her brain, each one of them causing a different type of seizure.
Mary told how there is no point in removing one, because you can’t remove them all: “There’ll be nothing left”.
The 27-year-old is non verbal, and only had a few words before her seizures at eight years old: “Cassie might be 28 next month but she’s a baby.
“When we were in Great Ormond Street they did her cognitive behaviour and she scaled at 18 - 24 months.”
Cassie’s parents Mary and John have tried all possible treatments for their daughter, from Vimpat Lacosamide to putting a nerve stimulator in her chest to try to stop the seizures, but none worked.
She had 52 seizures in a 24 hour window while in the Intensive Care Unit in Cork - which broke her metatarsal bone in both feet.
After a lot of research, Mary and John, with the help of Cassie’s doctors, applied for a license for Cannabis Oil - which was granted Christmas week 2017.
The treatment costs €9,000, and has been proven to be the only thing that works for Cassie: “I haven’t seen her this good in 20 years.
“She’s having 20 seizures a month instead of 300, we were up to that, she had 17 last month and the month before it was 20.
“A couple of drops of a plant several times a day is doing what all those other drugs couldn’t do”
However, the HSE have told the family that they will not be reimbursing the family the €9,000: “We can’t wrap our head around it.
“I don’t know if I was naive or what but I thought ‘right we’ll save up the money once and get reimbursed for it and that way can keep using the same money over and over again.
“We’re a normal family. I’m a carer and my husband works.”
Of the 16 people who hold this license, only three are being reimbursed.
The Stephens have now been forced to raise the €9,000 themselves in time for August, so Cassie can continue to improve and show her “little personality” that has been coming back from using the oil.
