On 31 December last year, mum Michelle and her 8-year-old son Leo excitedly flew to Tasmania to celebrate New Year’s Eve with family.
They have not been home ever since.
Within days of arriving in Tasmania Leo complained of a headache and was drinking large amounts of water. By the following afternoon, he was very unwell.
His mum said it was frightening how quickly Leo’s condition deteriorated.
“When I drove him to the local hospital and he could still walk, but just 15 minutes later, he needed a wheelchair to get into the emergency department.”
Leo was seen immediately and underwent multiple blood tests. He was admitted overnight and eventually had a lumbar puncture under general anaesthetic.
As Leo’s health continue to decline, an increasingly worried Michelle cancelled their flights home.
Leo’s bladder and bowels stopped functioning, he became confused and began hallucinating. Shortly after, he lost the use of his legs and then his left arm.
By the time Leo was transferred to the nearest major hospital, his right arm was completely paralysed, his eyes were rolling back constantly, and the hallucinations were non-stop.
“The last lucid thing Leo said to me was, “mum, don’t ever leave me,” and I promised him I wouldn’t, and that he can’t leave me either. I have not left his side since,” Michelle said.
Leo was placed in an induced coma and underwent an MRI of his brain and spine, which showed both were severely swollen. His stomach had stopped working and was filled with blood, and his lungs had also failed. He was now fully dependent on medical equipment to stay alive.
Michelle had a terrifying wait as teams of doctors and specialists raced to determine what was happening to her son.
Another lumbar puncture was performed, but still no diagnosis. The infectious diseases team continued investigating and consulting with specialist's interstate. Every test continued to come back negative.
“As the search for a diagnosis continued, I was told Leo was in a very vulnerable state and might not survive,” Michelle said.
Doctors determined that Leo needed a blood treatment known as plasmapheresis, which, because of his age needed to be done at the children’s hospital in Sydney.
Up until this point, Michelle had her family close by for support and to care for her older son Charlie. She said it was a scary moment flying away from them all not knowing what the future would hold.
After two weeks, neurologists at the children’s hospital diagnosed Leo with GFAP astrocytopathy - an extremely rare autoimmune disease. The condition, Michelle learned was only discovered in 2016, the year Leo was born.
Leo’s treatment was unrelenting. He had a total of six lumbar punctures, brain and spine MRIs, eight rounds of plasmapheresis, four rounds of IVIG/immunoglobulin and countless numbers of intravenous steroid injections and high dose medication. Leo was intubated and in an induced coma for over a month.
Amid the unimaginable pain and trauma, Starlight helped bring moments of light. Michelle recalls when Captain Starlight first visited Leo after he transferred from ICU to the ward.
“Leo was still completely paralysed and stuck in bed when the Starlight Captains came by. At first, he was quiet and unsure, but they were so kind and gentle, and connected with him and made him feel safe. Before long, the room was full of laughter, jokes and silly games.”
The visits from Captain Starlight were the best part of every long day in hospital and Leo also loved tuning in to Starlight TV. “Those small moments gave him something to look forward to when everything else felt scary and out of his control.”
Once Leo was able to use a wheelchair, he became a regular in the Starlight Express Room – it became his happy place in hospital. Getting to meet Sonic the Hedgehog was an absolute highlight.
“What makes the Starlight Express Room so special is the Captains. Leo lights up the second he sees them; they bring so much joy into his day.”
Michelle said it has been heartbreaking for their family to be separated for so long. Charlie is in his final years of high school so can only see his mum and Leo on weekends due to his study load. Michelle has not been able to return to work and her parents have flown from Tasmania to help out at home with Charlie.
When Charlie visits, the two brothers love to hang out together in the Starlight Express Room and play games. Michelle said, “It feel a bit more like he’s at home; those moments of normality make a huge difference, not just for him, but for all of us.”
Leo needs ongoing intensive physiotherapy, occupational therapy and speech therapy. He continues to attend hospital every weekday as an outpatient and sees the Urology team for bladder issues after months of a full-time catheter. He uses a wheelchair and is slowly learning to walk again.
“Our life as we knew it, has changed forever,” Michelle says. “None of it has been easy, physically or emotionally. But we are so proud of how far Leo has come. The day he took his first step unsupported was his biggest achievement, we both burst into tears of relief and happiness.”
Once they are able to return home, Leo will slowly start back at a new school which his mum says will be extra hard as he struggles with change due to his Autism.
As he’s got stronger, Leo has enjoyed starting building Lego again with the Captains keen to see his every next amazing creation!
“Without Starlight, Leo’s time in hospital would have been a lot harder. It’s such a foreign and unknown environment, and Starlight brings the joy and laughter that’s otherwise missing. It gives kids a chance to forget, even just for a little while, what they’re going through.”
The rarity of Leo’s condition means the recovery path is unknown. But Michelle said having Starlight there has helped Leo cope both medically and emotionally being separated from his brother.
“Starlight lifted his mood, gave him confidence and helped him bounce back after every setback. I honestly believe it’s been a big part of what kept his spirit strong through it all.”
