A 14-year-old Palmerston North girl who has lost consciousness every three days for almost two years does not know who she is, where she is, or even what her parents look like, every time she wakes up.
By Charlotte Cook of RNZ
"It's like waking up in another world, but you don't know what world you've come from," says Amelia Guest.
Amelia was 12 years old the first time she passed out - she was out cold for 45 minutes.
Two years later, it is still happening and doctors do not know what is wrong, other than a general diagnosis of Functional Neurological Disorder (FND).
Her medical records show lengthy lists of symptoms, including loss of sight and hearing, as well as hallucinations.
Her parents said it was like the romcom movie 50 First Dates, except it is a horror story.
'She looked at me and she didn't know who I was'
Amelia was thriving in 2024 - an outgoing, smart, happy kid. She loved dancing, playing sports and hanging out with her friends. Now she has few friends and just remembering the steps involved in brushing her teeth is a big deal.
Amelia was playing netball the first time it happened. Her Mum Lizi Guest caught her as she 'fainted'. She was unconscious for 45 minutes.
"The first question they [the hospital] asked was, is she having boy troubles? Or, you know, are there any anxiety issues?
"And I was thinking to myself... I have anxiety issues. But I've never been unresponsive for 45 minutes," said Guest
It was the start of years of appointments trying to work out why an otherwise healthy 12-year-old lost consciousness for nearly an hour.
After that first episode she was treated with medication for hemiplegic migraines and then two weeks later it happened again.
"I walked into the school hall, and I saw my child blue on the floor and completely unresponsive again, completely floppy."
It happened again on her 13th birthday.
"When she woke up this was the first time, she looked at me and she didn't know who I was."
Guest said despite endless tests, the doctors had no answers.
'We'd completely lost our child'
"From then Amelia lost all memory of who she was, including her date of birth, where she lived, what she looked like in the mirror, what siblings she had, who we were."
She would get frights seeing her little sister on a trampoline, because what looked like a solid surface was flexing. Amelia could not even remember how to use her drink bottle.
Eventually she lost the ability to read and write, and was often nonverbal.
Her mother kept taking her back to the children's ward, but due to her confusion Amelia was too agitated to be there.
The hospital said the only other option was Ward 21 - the Adults Mental Health Ward at Palmerston North Hospital.
Her parents did not consider that a viable option. She was 13 years and two days old, with no prior history of mental illness.
"We'd completely lost our child."
"A as a mum, you kind of have this default assumption... for the 13 years prior, no matter how bad things were, whether she was hurt or physically sick or sad, I was going to be a source of comfort for her.
"And to look at your child and to see no recognition in their eyes... but also to see fear.
"I can't think of anything worse."
'She was terrified of us'
After each episode, Amelia would slowly relearn things, taking at least 18 hours for her memory to slot back into place. Her parents each time convinced her of who they were and who she was.
"But everything she learned from that point she would retain until the next loss of consciousness. Sometimes up to 11 in one day.
"She was absolutely gone. And she was terrified of us."
Guest had to remove everything from her bedroom, and clear the walls, leaving only a mattress on the floor.
Guest and her partner were fortunate enough to be able to take time off, but the costs of around the clock care were unsustainable.
"I found her sitting outside of our two-story window [on the windowsill], not with any self-harm intention, just because she had no concept of gravity.
"We couldn't keep her safe at home without locking her in her bedroom."
Meanwhile, doctors were making no advances in understanding her condition and accused Amelia of faking it.
"We actually got an e-mail from the neurologist... it said that, you know, Amelia is a normal, if slightly weird child, and her parents are contributing to the problem."
Her parents stopped visiting for five days, but the episodes continued. RNZ has seen the subsequent apology.
After endless testing, EEGs, MRIs and lumbar punctures, doctors ruled out everything physical, landing on Functional Neurological Disorder.
"It's a disorder of the brain network and the signals in her brain are misfiring.
"Which puts you in no man's land because it goes over to mental health services, but it's not really a mental health condition either.
"It's not able to be treated by medication or anything like that.
"But equally, there's nothing to cut out or zap into place from a neurological point of view."
Guest said because it did not sit with any speciality in the already stretched medical system, they were left on their own with the child and adolescent mental health team, trying to understand the condition.
Her mum created resources for Amelia to use like a communication board when she was non verbal and picture print outs showing her who her parents were and what her sisters looked like every time she lost her memory. They hired a wheelchair for the days she couldn't walk.
Amelia was completely different and so was their life, with no answer in sight.
'You have to see it to believe it'
Carletta Macdonald is the team leader at Central Regional Health School for Manawatu, and has worked with Amelia for the past 18 months.
She is one of several students with FND. Macdonald said all of them presented very differently.
'She's gorgeous and wonderful... she can turn up and be 100% the kind of kid she was before.
"And then other times... She doesn't remember how to use her legs.... we would have to remind her where the toilet was and who we were."
Macdonald said she had never seen another child with the pattern like episodes Amelia has. Others with FND have often been triggered by traumatic brain injury.
"You have to see it to believe it."
She said there is no way a condition like this could be faked for two years
"It's a hard thing to imagine.
"But then when you see it in action, you see how hard she's trying."
Fighting to believe
On a good day, Amelia can have her makeup done, matched with a lip-gloss and perfectly slicked back hair.
Any onlooker would not know that she has re-taught herself how to read and write, and followed a checklist of how to brush her teeth.
But when it was bad - "A lot of the time I can't speak... like, I know what I want to say, but it just doesn't come out," said Amelia.
She will spontaneously vomit and not understand why her stomach was hurting.
"It's like waking up in another world, but you don't know what world you've come from," she said.
Amelia fights after each episode to put the pieces back together and feel safe around her parents.
"Sometimes it makes sense and sometimes I don't believe it."
She knows others might not believe her either.
"If you don't see me at my worst, you don't really understand me at my best, because they look very, very different."
But there is a plan for that - Sammy the Service Dog.
Team Sammy & Amelia
Pawsible Service dogs is a new charitable trust which is delivering some of the first canines to assist with FND in New Zealand.
Sammy and Natalie Ramm from the organisation have spent hours with Amelia, learning what her specific condition looks like and how he can help her.
"He is going to be help and keep me safe after an episode. He may be able to alert me to an episode. And then just give me some more independence and companionship."
Sammy can recognise when Amelia is getting tired - she starts jiggling and fidgeting and clenching her hands. Sammy knows to pop his head in her lap, forcing her to stop, relax and reset.
He will also be decked out with information on who to call if she has an episode.
"I look a bit older than I am and don't look like I have a disability. He is a cue for if I don't speak to someone or I don't act a way you would expect me to act. He's a cue to someone that something else is going on. It's not just being silly or being a teenager," said Amelia.
But the best thing he does, gives a 14-year-old her independence back.
And at the top of the list with her new freedom: "Maybe just walking into town or like going to a few shops by myself."
'We've tried to stop it'
Sammy will also relieve Amelia's parents of having to spend every second or third night waiting for her to lose consciousness and the disorientation that follows.
In the two years since Amelia got sick, five days in the longest they had gone without her passing out. At its worst it was 30 times in one weekend. She was still nonverbal a third of the time.
"We've tried to stop it... we've literally dumped ice water on her. We've tried to distract her... we've tried everything."
Now they just let it happen and once again prove they are her parents.
But Sammy has given Amelia so much purpose. She is fundraising, going to a special health school and getting her fitness up to walk round the block, said Guest
"Every day she can, whether she can talk or whether she can walk or whether she knows what's going on, she goes to school and she tries her absolute best, even when that was just learning to count again."
Amelia said she did not focus on what she had lost, she did not know what she was missing out.
But her parents know, despite how incredibly far she has come and the hope Sammy has given her, there is still a long way to go.
"One thing that's sadder than your kids growing up is when your kids don't have the opportunity to hit the milestones they should when they don't have the opportunity to start high school.
"And that's something that I never thought about before and I really wish I didn't know now."
Health New Zealand declined to speak about Amelia's case.
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