Lottie Garrett’s mysterious symptoms reveal devastating diagnosis
It started with a hand tremor but soon two-year-old Lottie couldn’t even crawl. The road to diagnosing the rare neurological condition had a devastating impact on her family.
When little Lottie Garrett was two years old she developed a tremor in her hand.
Her parents, Matt and Jess Garrett thought it was because they lived in the Adelaide Hills and it was cold.
When it didn’t go away they brought her to the Women’s and Children’s Hospital where she was diagnosed with cerebellitis, which is the inflammation of the cerebellum.
“They said that it’s something that she would recover from quite quickly,” Mrs Garrett said.
But, four days later, Lottie began to lose her ability to walk.
“She would be really shaky on her feet and couldn’t really walk straight,” Mr Garrett said.
The Echunga parents brought her straight back to the WCH, where doctors prescribed her a higher dose of steroids and told them to “give her time and she’d get better”.
But she didn’t and eventually Lottie couldn’t even crawl.
“She was constantly vomiting and nauseous and … it didn’t feel right,” Mrs Garrett said.
The pair brought their two-year-old back to the hospital and she was admitted for 12 days.
“They were able to see during that time that Lottie had a flicker in her eyes,” Mrs Garrett said.
It was then doctors diagnosed the little girl with a rare neurological disorder called — opsoclonus myoclonus ataxia syndrome (OMS).
The Garrett’s were eventually discharged on Christmas Eve, 2023, faced with the overwhelming reality of managing this rare disorder.
“It feels like sometimes you’re kind of left behind in this bubble of your life and this medical system — it’s really lonely,” Mrs Garrett said.
“You have to tell Lottie every day that things are going to be okay, when you don’t know that.
“That uncertainty is destroying at times.”
After Lottie’s discharge she was placed on an aggressive treatment plan including high-dose steroids, IV treatments and plasmapheresis with stays in PICU and hospital wards.
After a year of treatment, Lottie has turned a corner, and her parents are optimistic for their daughter.
“At the moment we are kind of navigating whether she is in kind of a remission, which is pretty amazing,” Mrs Garrett said.
“We’re working on her treatment and weaning things and adjusting things … we’re trying to fine tune it.”
Mr and Mrs Garrett said watching their small child undergo the treatments, including getting sedated and getting a port access took a massive toll on them.
Lottie has gone from strength to strength in the past four months, recently learning to sprint and jump and having her permacath removed a month ago.
“She’s doing well but it’s hard,” Mr Garrett said.
“When doing simple things like playing at the playground … she’s more nervous.
“Change is really hard for her or uncertainty or not maybe knowing what comes next and that’s probably a by-product of everything she’s gone through.”
Recently, Lottie had her Starlight Children’s Foundation wish granted and her dream of going to Bluey World on the Gold Coast came true.
“It was so exciting for all of us,” Mrs Garrett said.
“It gave us something to look forward to and it was the best week ever.”
This festive season the Starlight is hoping to raise $1.3m to help hospitalised children and grant Starlight Wishes to 410 seriously ill children.
You can donate at starlight.org.au.
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