Maisie from Gippsland

Maisie’s doing the hard yards with a smile

Maisie, 2, needs regular treatment at the hospital for a rare condition called lymphatic malformation.

After 24 appointments in the past 12 months, Mickey and Hayden Davies know the road from their Warragul home to the Royal Children’s Hospital all too well.

Maisie, 2, needs regular treatment at the hospital for a rare condition called lymphatic malformation.

The condition causes Maisie’s face to swell and mouth to bleed every few weeks.

And it means she will be a patient at the Royal Children’s for her entire childhood.

Mrs Davies said the decision to share the Good Friday Appeal’s funding with regional hospitals would make an enormous difference to families like hers.

“That’s going to be amazing, because if we have to come in it’s a four-hour return trip every time,” she said.

“And sometimes it’s days, so it’s going to be amazing to be able to go a bit more local so we’re not spending days out this way. It’s a benefit for us and everyone out in our area.”

Maisie, a lockdown baby, was born with her condition.

But it didn’t become obvious until she got Covid at nine months and one side of her face swelled up alarmingly.

“It wouldn’t go down, and it kept growing every time she got sick,” Mrs Davies said.

“We saw the specialists and they said they thought it was cancer, so we had a few scary weeks where we had to try and work out what was going on.”

Maisie was referred to the Royal Children’s, where her condition was diagnosed just before her first birthday.

Maisie has been treated by a team of specialists from a range of disciplines ever since.

“Her lymphatic system cells have kind of bundled together and caused these knots in her cheek, so they’ve created cysts,” Mrs Davies said.

“The micro cysts fill up with fluid and blood when she’s sick so they cause bleeds and swelling, so she quite often is in pain. It can be caused by sickness, or by her knocking it, or it can just be spontaneous … it’s always a guessing game.”

The most terrifying moment was when Maisie’s face “doubled in size” out of the blue a year ago. “We didn’t know if it was going to stop,” Mrs Davies said.

Maisie’s clinical nurse consultant, Jodie Simpson, said specialists from a wide variety of disciplines at the hospital worked together to offer her the best possible treatment.

“We see a number of kids like Maisie with very disfiguring lymphatic malformations involving their face and their neck,” she said.

“Lymphatic malformations can vary from a tiny little malformation that’s not causing too many issues to major functional impairment that really affects quality of life, and Maisie probably falls into that category.

“But she’s very resilient.”

Maisie has undergone sclerotherapy – a drug was injected into the cysts to try to reduce the swelling – and will have plastic surgery this year.

She’ll have a debulking surgery where they’ll do a partial facial reconstruction on her lip and cheek and jaw,” Mrs Davies said.

The Davies can’t speak highly enough of the world-class care they’ve had at the Royal Children’s.

“Having people who are experts in her condition is amazing. And they are liaising with lots of specialists overseas as well,” Mrs Davies said.

Written by Jen Kelly
Photos by David Caird
Published in the Herald Sun 09/02/2024

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