Did someone say treasure hunt? As soon as Lottie heard those words her face lit up.
It was her favourite thing about hospital and gave her the happiness she needed after her world was turned on its head.
“Lottie’s health journey started with a tremor in her hand,” Lottie’s dad Matt explains. “We never imagined this seemingly minor symptom would escalate so quickly.”
Doctors initially diagnosed Lottie with cerebellitis- an inflammation in the brain. After several hospital admissions and rounds of steroid treatment, Lottie was sent home to recover.
Sadly, instead of improving, Lottie's condition continued to decline. “The deterioration was rapid and frightening – she lost the ability to crawl, leaving her essentially immobile,” Matt said.
Matt and mum Jess rushed Lottie back to hospital. It was during this admission that Lottie was diagnosed with Opsoclonus Myoclonus Ataxia Syndrome (OMS) - an extremely rare neurological disorder where the immune system mistakenly attacks the brain.
Matt remembers the moment vividly – it was Christmas Eve. “We were relieved to finally have a name for Lottie's condition but then faced the overwhelming reality of managing this rare disorder,” Matt said.
Treatment for Lottie’s condition was gruelling. She needed multiple MRIs on her brain, as well as tests to screen for neuroblastoma, which can sometimes be associated with OMS. She underwent high-dose steroid pulses, Intravenous Immunoglobulin treatments and painful procedures to remove plasma from her blood.
Lottie spent long agonising days isolated in Paediatric Intensive Care.
“Hospital took its toll; it was emotionally draining on all of us. Suddenly your life has no routine, you can’t plan anything, hospital takes over,” Matt said.
As part of her ongoing treatment, Lottie had a permacath inserted (a type of long-term IV catheter used to administer medicine) for nine months, which meant no swimming or normal baths or showers as it had to stay waterproof.
She also had a Naso Gastric Tube for nearly 15 months.
Matt said it was hard to see Lottie go from bright and energetic to being withdrawn and filled with fear. Lottie felt frustrated and sad not being able to do all the fun things like she used to.
The one bright light amid so much darkness was Captain Starlight.
For Lottie, the highlight of every day on the hospital ward was seeing Captain Starlight to sing songs together and play with play-doh.
“The Captain Starlights always made her happy. When Lottie was engrossed in play, she was transported away from the clinical environment and could forget about her medical reality for a while.”
Matt said hospital had made Lottie wary of new people, but interacting with the Captains helped Lottie build up her confidence again and brought back her ‘fun, crazy side.’
“The Captains were familiar faces to her that were all about fun. They showed her that every interaction in hospital doesn’t have to be negative.”
When Lottie was feeling well enough, she loved going to the Starlight Express Room to play with the cash registers, do arts and crafts, play music and of course go treasure hunting!
“Play provides crucial normalisation reinforcing a child's identity beyond being "a patient." This has been especially important for us with a rare condition like OMS, where so much of our lives became consumed by hospital and treatments,” Matt said.
Thankfully, Lottie’s condition improved over time and her treatments have become less invasive.
Having her permacath removed has been transformative, enabling Lottie to splash about in the water again. She has started to take oral tablets, which she is incredibly proud of after having her feeding tube for over a year.
Matt said Lottie continues to go from ‘strength to strength’ and there have been so many recent achievements to celebrate – including her learning to run, jump, hop and climb the ropes at her local playground.
Lottie also had the exciting news that she had been granted her Starlight Wish to go to Bluey’s World. Lottie counted down the sleeps until she could pack her bags to go and see Bluey and Bingo!
The family enjoyed a week- long adventure in Queensland complete with animal encounters at Australia Zoo and fun in the water. After the pain and sadness of so many months in hospital, Lottie got to be a kid again and spend time together with her family including baby brother Teddy.
“Lottie’s wish brought us so much happiness; we could never have matched the magic that Starlight created for us. It was the best week of Lottie’s life, and we’ll remember it forever,” Matt said.
Hospital and treatment are still part of Lottie’s life and Matt and Jess cannot imagine hospital without the joy Starlight brings.
“Having witnessed Lottie's extensive hospital journey, I've seen first-hand the transformative power of fun, laughter and play for children facing medical challenges.Fun and laughter don't just distract from illness; they actively contribute to healing by reducing stress and strengthening the resilience children need to face their next medical challenge with greater emotional reserves,” dad said.
