A common cold left Lottie unable to walk
Lottie was a healthy, happy two-year-old when she caught a common cold.
Her parents Matt Garrett and Jess Tillbrook weren't too worried, until they spotted a tremor in their daughter's hand.
"It was just a slight jerk in her arm, normally when she was eating," Garrett, 32, from Queensland, tells nine.com.au.
Matt Garrett and Jess Tillbrook with their daughter Lottie. Starlight Children's Foundation
"We just thought it was a cold morning. Then after four days we thought, 'Let's go get this checked out' and we went down to the local [hospital] emergency because we weren't sure where to go."
They were sent home without a diagnosis. Lottie quickly deteriorated and much to her parent's horror, lost the ability to walk.
They rushed her back to hospital where she was diagnosed with cerebellitis, or inflammation of the cerebellum. After several hospital admissions and rounds of steroid treatments, they were sent home.
"At that stage we thought it was some temporary issue that would be sorted quickly," Garrett says.
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Lottie was a healthy, happy two-year-old when she caught a common cold. Starlight Children's Foundation
However, instead of improving, Lottie's condition continued to decline.
Her deterioration was rapid and frightening. She lost even the ability to crawl, leaving her essentially immobile.
The worried parents took her back to hospital where she remained for two weeks, just before Christmas in 2023.
This time, Lottie was diagnosed with Opsoclonus Myoclonus Ataxia Syndrome, an extremely rare neurological disorder where the immune system mistakenly attacks the brain, which they were later told was an autoimmune condition that had been triggered by her cold.
"Because there were certain eye movements, the doctors were able to pick up that she had it."
Lottie underwent aggressive treatment including high-dose steroid pulses and Intravenous Immunoglobulin (IVIG) treatments and plasmapheresis, first in the Pediatric Intensive Care Unit (PICU) and later on the Renal Ward.
Garrett and Tillbrook would take turns taking time off work to care for Lottie, and during this time they welcomed their son Teddy.
"Jess or I would be off work or she has a support worker, and we'd pretty much just be holding her hand or supporting her to move around because she was such a big risk at the time."
Lottie underwent aggressive treatment, including high-dose steroid pulses. Starlight Children's Foundation
To facilitate Lottie's treatment, she had a permacath – a tube inserted into a large vein that runs to her heart – inserted for nine months. This prevented her from swimming or taking normal baths and showers as it needed to remain waterproof.
Lottie would also suffer from emotional dysregulation and "rage attacks": "She'll just be completely inconsolable for between 20 minutes and an hour."
It has only been in the past four months that Lottie, now four, has begun enjoying her mobility again.
She can now sprint, jump with both feet, hop, and climb unassisted over the ropes at the local playground.
The Starlight Captains in hospital helped to cheer Lottie up during tough times. Starlight Children's Foundation
Her permacath was removed a month ago and Lottie has now returned to the pool, and she loves being in the water.
To cap off what has been an incredible year of recovery, Lottie has been granted her Starlight Wish – to go to Bluey's World on the Gold Coast.
Lottie counted down the sleeps until she could pack her bags to go and see Bluey and Bingo.
"We just went up there and had like the best week of all of our lives, because Lottie was just feeling a little bit better and she could move independently," Garrett said.
She relied on Bluey to see her through her grueling hospital admissions. Starlight Children's Foundation
Garrett says Bluey got the family through difficult times during Lottie's many long hospital admissions.
Lottie will need to be continually monitored due to her condition and is still undergoing treatment.
"She's been through remission. She still gets a little bit of tremor when she's quite tired. We're more managing her fatigue."
Lottie will need to be continually monitored due to her condition and is still undergoing treatment. Starlight Children's Foundation
Lottie, now four, with her brother Teddy, one. Starlight Children's Foundation
They are also working on building Lottie's social skills, as she missed crucial years developing them through Kindy and playground visits.
Lottie also does speech and facial therapy along with physio.
"We're still working on strengthening her muscles and her core. She lost some of the sensation in her body and doesn't have that same ability and spatial awareness," Garrett says.
Garrett says the experience has left him and his partner with an "unbreakable" bond.
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Lottie was granted her Starlight Wish this year, to visit Bluey's world on the Gold Coast. Starlight Children's Foundation
"We don't even know how we've gotten through this. I think once you're in it, you will do anything for you kids and it doesn't really matter what the cost is for you.
"We still have elements of burnout and being exhausted from what we have been through. I guess on the flip side as well, it's made us unbreakable."
Lottie's family are sharing their story in support of the Starlight Children's Foundation Christmas Appeal, calling on the community to raise $1.3M by Christmas Eve to bring joy to seriously ill children in hospital and achieve the goal of granting 410 children their Starlight Wish this year. Donate via Starlight starlight.au/christmas
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