Little superhero’s smile says it all

Thanks to the Royal Children’s Hospital incredible teamwork,
Leo has grown into a “resilient, cheeky, part-time musician” who loves his toy instruments, animals, food and swimming.

Little Leo truly dances to his own tune.

He has a combination of three conditions that nobody else in the world has.

But thanks to the Royal Children’s Hospital incredible teamwork, he has grown into a “resilient, cheeky, part-time musician” who loves his toy instruments, animals, food and swimming.

Mum Rhiannon says 16-month-old Leo would not be here without the hospital, whose staff came up with innovative solutions when the treatment for one condition risked aggravating another.

Her “brave little boy” has Netherton syndrome, a rare genetic disorder that affects his skin, hair and growth; and was born with both his feet turned inward.

He also receives fluids via a feeding tube, which he carries around in a little backpack, as he struggles to swallow fluids without them entering his airway.

Rhiannon said his sunburnt-like skin – which leaves him prone to infections – could not tolerate the weekly casts typically used to correct his feet and ensure he could one day walk on them.

Picture: Mark Stewart

“The amazing staff would often use their lunch breaks to come and change Leo’s plasters each day on the ward,” she said.

“After approximately eight months of treatment, 126 casts, a surgery and a whole lot of effort from the team, Leo graduated to his boot and bar.”

This progress is just one example of the massive team backing little Leo, who spent more than 200 days at the hospital in his first year of life and still visits from Bendigo several times a week.

“He just bounces back from everything,” she said. “He is starting to talk, put weight on his legs and is very interested in the world around him.”

He has come a long way since he was in the neonatal intensive care unit – where he fought off a life-threatening sepsis complication – and Rhiannon listed 20 different departments that have helped with his care, from genetics and paediatric surgery to physiotherapy and dietetics.

“They’re pretty amazing and phenomenal and they all just put the kids first,” she said. “The efforts of the RCH have been outstanding for Leo and also for the other few children around the world with Netherton syndrome, who can now benefit from the research and trials conducted here.

“We are so very blessed to have the RCH and the Good Friday Appeal, it saves the lives of little superheroes like Leo every day.

“Leo’s smile says it all.”

Written By Sarah Booth
Published: Herald Sun 05/04/2023

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