A grieving Rotorua father found his youngest daughter dead at the end of her bed 40 minutes after he had comforted her back to sleep.
Krystal Michelle Loye, 35, is one of six New Zealanders lost to SUDEP (sudden unexplained death in epilepsy) after a government-funded medication brand switch.
Today, her dad Gary Loye shared his heartbreaking account of the day he found his "pure" daughter dead.
He speaks as part of this week's unusual coronial inquest into the brand switch at Auckland District Court.
It was early in the morning of February 23, 2020.
Loye was watching a Blues vs Bulls rugby game in the lounge when he heard his daughter gargling so rushed in and sat with her until she fell back asleep.
"She was in bed, I just held her, comforting her and waited for it to pass and then she went back to sleep ... she'd had more violent ones in the past," Loye said.
Loye said the seizure was unusual because she had only had one other episode in nearly two years.
At one stage in her life she would get about 60 seizures a day and then for nearly two years she had only two, Loye said.
In September last year - just months prior to her death, Pharmac substituted the brand of her medication to Logem.
I remember being told there was a brand change and I remember asking 'will the change make any difference' but the doctor said 'no' ... I asked why there had been a change and he said it was cheaper, Loye told the courtroom.
Krystal's doctor Dr David Sharples, who spoke in court, said he did say it was cheaper and deemed equivalent by Pharmac to her previous drug which she had been on for about a decade.
Sharples said he never talked to the family about the risk of SUDEP.
Loye, like the five other grieving families filling the sits of the public gallery, believe the drug killed his loved one.
"Krystal was pure and had a smile for everyone," Loye said through tears.
"She was much loved by me and we miss her."
Parents believe Pharmac-funded drug to blame
It comes after New Zealand's drug-buying agency Pharmac faced a raft of criticism for switching the brand of the drug, affecting 11,000 patients, sparking an internal review.
The Pharmac investigation found no wrongdoing in the decision to change the brand of the drug it funded, and Logem still remains publicly available - though the agency also bought back the original funded medicine.
Epilepsy New Zealand chief executive Ross Smith last week told the Herald part of the issue was patients weren't being properly consulted when there was a brand change - and that didn't just apply to this drug.
The country's Medicine Safety Authority, MedSafe, says Pharmac should avoid changing brands whenever possible as there is a risk of destabilising treatment for these patients.
The issue is clouded by the fact SUDEP (sudden unexplained death in epilepsy) affects one in 1000 young adults (aged 20-45), where a cause of death cannot be found.
MedSafe has stressed anyone taking anti-epilepsy medication is to keep taking it and if they have concerns to talk to their doctor.
Chief Coroner Judge Deborah Marshall will hear from families, doctors, Pharmac representatives and other health experts before she is expected to make a decision next February.
A Pharmac spokeswoman said representatives of the agency were scheduled to give evidence in late February 2021, so it was not appropriate to comment during the proceedings.
CORRECTION AND APOLOGY
In the article titled "Epilepsy deaths inquest: day one – grieving father said goodnight to his daughter 40 minutes before finding her dead" which was published on the New Zealand Herald website at 11.59 am on 30 November 2020, it was stated that Krystle Loye's doctor, Dr David Sharples, "switched the brand of her medication to Logem".
This is incorrect - the brand of medication was substituted by Pharmac.
The New Zealand Herald apologises to Dr Sharples for this error.