Teen with rare drug-resistant epilepsy battles third coma

A Rotorua family faces an agonising wait for their 17-year-old son to wake up from his third coma in a month as he battles a rare drug-resistant form of autoimmune epilepsy.

Kelly Quilty says her son Ryan used to love nothing more than to drum, draw and play outside.

"He used to come first in cross-country, used to love riding his bike and bouncing on the trampoline," the 43-year-old nurse told 1News.

Ryan was 10 when his youngest sister was born, and Quilty said the family had two brilliant, fun-filled years with all four of their children before he first experienced a "hand flick".

"He would say things like 'mama I can’t move. My brain wants to move, and I can’t'."

Over the five years since that day, she's watched her now teenage son be misdiagnosed, endure three separate comas and become high risk of developing Sudden Unexpected Death in Epilepsy (SUDEP).

"He went to the GP, and they said 'look, with seizures, you'll grow out of it'. They gave him medication, and then things just worsened from age 12, and we just started getting more and more medications for seizures, but the seizures kept getting worse," she said.

Kelly described his seizures as "strange" and "frightening" because he is awake during them, and could look around. She says the first doctor gave Ryan a diagnosis of "functional epilepsy", which meant he experienced involuntary, disabling, seizure-like episodes that are not caused by abnormal electrical brain activity.

They met with another doctor, who said Ryan also showed signs of autoimmune epilepsy, where seizures are caused by the immune system mistakenly attacking brain cells.

"Ryan had all the classic symptoms - so left face, left eye, left hand and foot pain. And then it would generalise, so he was very fatigued, he has seizures at nighttime, he has seizures falling asleep and then he gets sick," Kelly said.

She says she knew something was seriously wrong with her son, but continued to try and work with doctors over the years that followed as Ryan continued to have daily, and nightly, seizures.

"We nursed him through the night because he has lots of nocturnal seizures. So my husband Trevor and I were juggling the four kids and part-time work. At night times it's very sad and dark when your son falls asleep, and he has a seizure. It's a very lonely journey."

In October 2025, an epidemiologist referred Ryan to Brisbane Hospital for brain testing, and he was trailed on various medications both in Australia and New Zealand over the months that followed, to no avail.

She said Ryan had a "paradoxical reaction to benzodiazepines", the drugs normally used to treat epileptics, and his condition continued to deteriorate until he was flown to Waikato Hospital and put into his first coma in early January this year.

"They brought him out of the coma, but his brain has been stuck as every time he falls asleep, he has another seizure.

"They tried medications, and sadly, Ryan got put in another coma in ICU after being taken out of the first one, because he was given other medications and that exacerbated his seizures."

Since the comas earlier this month, Kelly says Ryan has been receiving immunotherapy, which would be a "clinical indicator" if Ryan improved on it.

"We're in a really nerve-wracking and sad phase. We’ve had the steroid therapy for immunotherapy for a week, and now it's kind of a 'watch and wait to see' if the seizures can improve,” she said.

Unfortunately, she said Ryan was put back into a coma for the third time at 2am on January 23, due to his inability to stop seizing.

"He remains this way while doctors wait to see if the immunotherapy can take effect," she says.

Kelly's voice was filled with emotion as she said: "It's been a hard road".

"For five years a child has suffered, the parents weren't so much believed, they put a functional non-epileptic diagnosis on, and the family have had to work really hard to advocate and get our child reviewed and get them to listen," she said.

She says she wants other people to be aware of the possibility of being misdiagnosed as "functional", which she says ultimately, she believes, set back her son's recovery.

"It's a very frightening time because when doctors put a 'functional' label on, you have to be so careful because you can harm an epileptic, as was the case with Ryan. Because if you have autoimmune epilepsy, it's very rare and medications can make the disease a lot worse, including epileptic drugs."

"In life, things can really change. You can have a normal child, and then one day they can't run around, and he won't be able to experience jumping into a waterfall, or jumping off a jetty or going to the luge.

"It's a real grieving process as well. For five years, my husband and I have tried to juggle wages, and missing out on our work and you lose a lot. It's not just financial - it's your time, your life, holidays.”

Kelly said after losing so much, her family was grateful for all the support from a GiveALittle page set up by a close friend.

She said the page meant “so much more than even the money”.

"It's the comments, it’s the messages, as well, when you’re so alone. My husband especially was blown away that there are people we don’t even know donating, and that is so comforting because for five years we felt very alone."

Kelly says the funds would go toward a seizure alarm and anti-suffocation bedding for Ryan, alongside funds to support both parents taking time off work to nurse their son.

Neuroscientist Mangor Peterson, associate professor in epilepsy, traumatic brain injury and general neuroscience at Auckland University, said Ryan's case was "quite a familiar story", particularly with drug-resistant epilepsy.

"I think it’s quite common because they don’t respond to the drugs and that can be a very challenging path. We've seen in the past it has happened and it can take 20-plus years to get the right treatment plan for a patient," he said.

Paterson said due to the science-driven nature of neurology, clinicians are reliant on MRI imaging and EEG, forming evidence from "objective markers", which could look like "scarring" on the brain.

"If you see one of those, you can often go in and say, 'this is likely where the seizures are coming from' and you can do surgery".

Without this information he said it can be "very hard to tell where in the brain the seizures are coming from and what type of seizures they are".

"If it's something a bit more rare or atypical, it becomes exponentially harder to diagnose and treat."

Peterson is a researcher on the Australian Epileptic Project, with the "big goal" of improving the initial diagnosis, follow up and "getting the right treatment as early as we can".

"We're funded $30 million for this exact problem, to try and minimise the time to have better diagnosis, prospective data, better quality MRIs, so we can get to that treatment faster. So it is something we're working very hard on, but it can be challenging for the clinician," he said.