AS HARMONY Fielden gleefully sprints around in Grafton's See Park playground, you can see how she has earned the nicknames Pocket Rocket and Houdini.

What you'd never guess is that the bubbly five-year-old, who has just finished her first week of kindergarten, lives with a disease so rare that she may be the only child in the world with it.

They took mine and her father's blood and had 20,000 genetic tests done but couldn't pick up anything, so we're starting to think Harmony has created her own disease

When The Daily Examiner first met the Grafton girl and her mum Samantha in 2013, Harmony had been tentatively diagnosed with a rare condition called metaphyseal dysplasia, which causes deformities and curvature in her bones.

"She was walking at seven months, but I knew there was something wrong and couldn't put a finger on it," Ms Fielden said.

"At first they said she might not grow, and could become blind, deaf, or mentally retarded. It was so hard because they don't know the outcome of her life."

But over the years, the progression of her condition saw Harmony's diagnosis change numerous times, to the point where it can no longer be classified.

"She is now on a research program at the moment to undergo genetic testing; they think she might be the only child in the world with her condition," Ms Fielden said.

"They took mine and her father's blood and had 20,000 genetic tests done but couldn't pick up anything, so we're starting to think Harmony has created her own disease."

On March 9, Harmony will be wheeled into the operating theatre at Westmead Children's Hospital for a 10-hour operation, which will hopefully help to straighten her legs, which are bowed, and reduce the impacts of her sometimes painful condition.

It will be her second major operation, having undergone a major surgery to correct her hip joints, which have grown so her femur bone is not connected with a normal ball-and-socket joint.

But because doctors don't know exactly what Harmony has, they're not 100% sure this one will work.

"With all of Harmony's surgeries she's like a guinea pig," Ms Fielden said.

"The first surgery she had was six hours and she was pretty sick from it, but her hips have healed beautifully and if the bones have fused together they'll be able to take the pins out. They just want to fix one piece at a time."

And while Harmony has been through more than most of the kids in her kindy class, her mum says she had the spirit to deal with it.

"After her first surgery I woke up beside her bed and there were paddlepop sticks all over it," she laughed.

"It turned out she'd been buzzing the nurses in all night to get ice-cream. She told the nurses, 'don't wake mummy, she can sleep'."

Fundraiser for Harmony 

TO RAISE money for expenses associated with Harmony's upcoming surgery and recovery, the family is hosting a charity garage sale.

Ms Fielden said they already had so many donations that they are quickly running out of room to store it.

"I want to say a massive thank you from myself for everyone that has donated stuff for Harmony's fundraiser, it means a lot," she said.

Harmony's fundraiser garage sale will be held at the New School of Arts on February 27-28, with Love em Scrub em doing dog washing for $20 per dog on the Saturday.



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