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Henry’s story
August 27, 2025
Henry was the kind of kid who made friends without saying a word. He had a quiet charm that drew people in — from nurses to classmates and even strangers.
“He only ever made a friend,” his mum Jess says. “It was just so cool to watch.”
Born in Shepparton in 2007, Henry lived with complex medical needs from infancy. He had cerebral palsy, epilepsy, severe respiratory issues and was visually impaired. But Jess is quick to point out that Henry was never defined by his diagnoses.
He brought extraordinary people into our world and made us better people.
I don’t know who I’d be if he hadn’t entered my life.
Henry’s care often meant long hospital stays in Melbourne, away from his siblings and dad, Paul. Jess recalls the whirlwind of specialists, medications, and emergency flights.
“Behind the scenes, there was so much more going on than people realised, but we just did what needed to be done.”
It was during one of those hospital stays that Jess first heard about Very Special Kids. A fellow parent mentioned the organisation, and soon Jess was connected with Jenni, a Shepparton based family support practitioner.
“We couldn’t believe it when she told us all the services that were available,” Jess says.
“There was a level of excitement that there was actually a service out there for the whole family.”
Holistic care now and beyond
Very Special Kids became a constant presence — offering respite, emotional support and connection for the family of five. “They’re the only ones who do the after,” Jess says. “When your child dies, everyone else steps away. But Very Special Kids stay.”
Henry sadly died in 2013. In the years since, Jess has found many ways to honour Henry’s legacy through creativity and advocacy.
In 2010, she founded Made By You, inspired by her time with Henry in hospital. “I saw how important it was for kids to experience joy beyond their illness,” she says. “To express the essence of who they are.”
Made By You is a vibrant art-centred project that gives children with life-limiting conditions the chance to design their own t-shirt — a reflection of their personality, not their diagnosis. “The dream was that someone would ask, ‘Is that made by you?’” Jess says. “And the child could say, ‘Yes,’ with pride.”
Jess has kindly dedicated time to craft unique t-shirt creations at our sibling days, hospice and family events.
“Some kids are so particular with their designs. You can see they’ve poured their heart into it,” she says.
“And when they put the shirt on, it’s magic.”
Jess also recently facilitated a palliative care education symposium in regional Victoria, bringing together organisations and professionals to raise awareness.
“There’s a real gap in understanding paediatric palliative care, especially in regional areas,” she says. “I want families to know what’s out there — to feel supported, not alone.”
Looking back, Jess says Henry’s life continues to ripple outward. “He made me who I am,” she says. “And now I just want to give back.”
