‘Useless’: Family searching for answers after Indented Head teen given rare FND diagnosis

The family of a young girl struggling with a rare neurological condition is calling for more research, saying they feel “broken” by a diagnosis with no answers.

Piper Martin is a 14 year old battling Functional neurological disorder.

The family of a young Indented Head teen struggling with a rare neurological condition is calling for more research, saying they feel “broken” by a diagnosis with no answers.

Growing up, Piper’s parents Tiffany and Daniel Martin said she was an outgoing, bubbly girl.

Then three years ago, around the time the now-14-year-old started high school, she blacked-out in the shower.

“We took her to hospital but they couldn’t find anything wrong and didn’t do much,” Mr Martin said.

“Then she fainted at a school assembly, and they had fireys, police and ambos there, but again at the hospital they couldn’t find anything.”

Mr Martin said Piper then started to have a few hundred seizures each day, blacking out and shaking, with tests and doctors offering no answers.

“It took us a good 12 months to get a diagnosis,” Mr Martin said.

The family spent thousands of dollars on medical treatments, specialists, seven day brain scans and still found nothing, but then a neurologist gave it a name — functional neurological disorder (FND).

At just 14 Piper Martin is battling Functional neurological disorder.

It is a condition affecting signals between the brain and body.

“It kind of felt like, ‘here’s a name for it’ and a few coping mechanism … learn how to live with it,” he said.

Mr Martin said FND is poorly understood, but can be linked to trauma, so they’ve sent Piper to multiple psychologists, counsellors and a neurologist, all to no avail.

“I’ve got respect for Geelong Hospital, but we’ve been told it’s in your head go away, she’s devastated,” he said.

“MRI, CT, blood, epilepsy tests, everything keeps coming back with nothing but there’s obviously something there that we are missing.

“But we’ve got to learn so much more about how the brain works. They’ve given this diagnosis but then have no answers.”

Ms Martin said since her daughter was diagnosed she had since developed tourrettes.

“She’s been in an out of school and gets picked on,” she said.

“You can imagine how cruel kids at 14 are.”

Three years on, the situation is only deteriorating, with Piper in hospital again last Friday unable to hold down food without seizures and vomiting.

“Some days she gets up and goes to school, some weeks she spends three days in bed,” she said.

“We feel broken … we’ve really gotten nowhere.

“We cant just keep dragging her to the hospital, all she wants is help and no one will help her.”

Mr Martin said when the doctors sent them home on Friday, nurses seemed dumbfounded, but the medical system has no answers for them.

“We’re a strong family but its heartbreaking watching your daughter go through this,” she said.

“It’s unfair on Piper.”

“It's a vicious cycle, her mental health is deteriorating because of the illness, and her condition worsens with stress.”

On Friday Mr and Ms Martin set up a GoFundMe account to assist with covering expenses to see more specialists.

So far they have raised $200.

Barwon Health have been contacted for comment.

Originally published as ‘Useless’: Family searching for answers after Indented Head teen given rare FND diagnosis