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Lachie’s story
June 15, 2026
“Lachie’s now learning to walk with a walking frame. He likes chasing his little sister and he’s always trying to run over people’s toes.
He’s a bit cheeky!”
When Lachie was two-and-a-half years old, he was diagnosed with Pelizaeus-Merzbacher Disease, or ‘PMD’ as it’s known.
PMD is a rare genetic condition that affects the coating around the nerves, stopping messages travelling from his brain to his body.
Lachie knows what he wants, but due to his condition, his body often won’t comply.
Like the conditions of so many very special children, PMD has no effective treatment, and no hope for a cure.
“First we thought, ‘At least we know what’s going on and he won’t get any worse’.
Then we found out Lachie’s condition was progressive. That was a really big blow.”
Despite everything, Lachie is still very much a happy child. He lives with his mum, dad, and little sister, Jasmine, on a country block in Goulburn Valley.
The great outdoors, Alanna says, is where Lachie loves to be.
“He’s a cheeky, happy-go-lucky boy who takes everything in his stride. We’ve got a paddock out the back and he loves spending time there with the sheep.”
But their joy is mixed with heartache as Lachie’s condition will worsen as he grows.
For families of very special kids outside major cities, specialised paediatric care can mean hours of travel, time away from home, and long periods separated from support networks – during the very moments they need them most.
Then there’s the profound sense of isolation, which is all too familiar to Lachie’s mum, Alanna.
“It can feel really lonely sometimes. There aren’t many other families with very special children around here. Even your wider family doesn’t always get it. People say, ‘Oh yeah, that’d be hard,’ but they don’t really understand.”
After Lachie was diagnosed, his family were referred to Very Special Kids and received their own family support practitioner, Jenni.
Alanna sums it up as: “life-changing”.
“When Jenni first came out and did a home visit, it was so lovely. She’s seen many other families in similar situations, so she gets it. She just understands. She’s such an easy person to talk to.”
“Matt will be in the kitchen cooking, while Jenni and I will sit at the table and have a chat. Because it’s not a clinical setting, it feels refreshing, not draining.”
Like every family support practitioner, Jenni has an extremely heavy caseload.
She tirelessly supports over 40 very special children and their families right across the Hume region in country Victoria. As Jenni herself explains:
“All family support practitioners are at full capacity. We’re constantly having to triage families and make difficult decisions about which family should take priority.”
We simply need more practitioners.
It’s never been more necessary.
We urgently need your help to hire more family support practitioners, so that wherever a family with a seriously ill child is in Victoria, there’s someone to walk beside them, providing advice, support, and respite care at Very Special Kids House.
For now, Lachie is defying what the doctors said was possible. But his family lives with the constant uncertainty of what tomorrow will bring.
Your tax-deductible gift before June 30 can help make sure Lachie’s family, and others like them, have someone beside them for every step still to come.
