Lani Matulino, 5, before she became ill. Picture: supplied
Lani Matulino, 5, before she became ill. Picture: supplied

‘Brain on fire’: Family’s battle after shock diagnosis

This time last year, little Lani Matulino was a happy and healthy prep student who loved to dance and bake cakes.

But in May the Matulino family's world was turned upside down, when Lani's complaint of "feeling weird" ended in the diagnosis of a rare auto-immune disorder.

Lani complained of feeling unwell, then two days later had a seizure and was rushed to Logan Hospital.

She was soon discharged, with no answers, but a strange array of symptoms developed.

Lani continued to have seizures, developed a twitch, was emotional, and started to slur her words.

In the hospital, she was periodically catatonic.

"She was all over the place," mum Maryanne said.

Lani Matulino‘s mother describes her daughter as a “girly-girl” who loved to dance and bake. Picture: supplied
Lani Matulino‘s mother describes her daughter as a “girly-girl” who loved to dance and bake. Picture: supplied

Lani's parents continued to demand answers about what was happening to their little girl.

Until she was taken to Queensland Children's Hospital, where she was diagnosed with Anti NMDA Receptor Encephalitis - a rare disorder that attacks the brain, leading to memory loss, intellectual changes, seizures, and sometimes death.

"I'd never heard of it, it was a massive shock to us," Ms Matulino said.

The disease was popularised in the autobiography and movie "Brain on Fire", in which young reporter Susannah Cahalan recounts her descent into madness as her condition was repeatedly misdiagnosed.

QCH doctors were able to make a diagnosis within a week, but during her treatment, Lani suffered a cardiac arrest, which cut off oxygen to her brain and caused brain damage.

 

Lani was diagnosed with Anti NMDA Receptor Encephalitis, a rare auto-immune disease, where the body creates antibodies against the NMDA receptors in the brain. Picture: supplied
Lani was diagnosed with Anti NMDA Receptor Encephalitis, a rare auto-immune disease, where the body creates antibodies against the NMDA receptors in the brain. Picture: supplied

"Had we only been dealing with the encelophlitis they reckon it's about six to nine months to be back to 85-90 per cent of yourself, but because she had that cardiac arrest which resulted in an acquired brain injury that's just completely changed everything," Ms Matulino said.

"We still haven't been able to form any clear communication with her, so she's still not talking, unable to move any parts of her body, no control, so that's been the hard part.

"Sometimes we're able to get a few purposeful blinks out of her, when we ask questions, and then other times we are not sure if it's just a blink.

"Their long term prognosis is that she won't be able to do anything, we just have to keep hoping that she'll defy their prognosis."

During treatment, Lani suffered a cardiac arrest, which has resulted in brain damage. Picture: supplied
During treatment, Lani suffered a cardiac arrest, which has resulted in brain damage. Picture: supplied

The family are hoping for a miracle.

Ms Matulino said before she got sick, Lani was a girly-girl who "would not sit still".

"We've got three girls and her dad was so such she was going to be the tomboy out of the girls but she ended up being the girliest."

Lani Matulino with her two older sisters. Picture: supplied
Lani Matulino with her two older sisters. Picture: supplied

The family want to raise awareness about the rare condition.

"There must be so many people that go undiagnosed with it being schizophrenia or having a severe mental illness," Ms Matulino said.

"We didn't know anything but we were very lucky at Queensland Children's Hospital to have doctors who had seen doctors who had been through this, so they knew instantly what she had they just had to wait for the results to come back.

"If anyone else is worried about their child and think they might have similar symptoms with encephalitis, we just really strongly urge them to keep researching and pushing their doctors."

To support Lani's ongoing care: https://au.gofundme.com/f/praying-for-young-lani-amp-her-family

Originally published as 'Brain on fire': Family's battle after shock diagnosis



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