JAZMIN Grygoruk spent her whole life fighting.
She was born legs first in 1989 with the umbilical cord wrapped around her neck and covered in bruises from her breech birth.
Little Jazmin then spent the first 11 days of her life under medical observation before she was allowed to go home with first time parents Darilyn and John.
Despite her dramatic entrance into the world, the first six months of her life were happy ones.
She passed all of her milestones - rolling, lifting her head, vocalising and playing with toys.
At about six months of age her parents Darilyn and John took Jazmin to see a doctor to correct the squint and turned-in eye that she'd had since birth and that's when everything changed.
Jazmin was prescribed glasses to help with what doctors believes to be long sightedness.
"Once she was wearing the glasses she stopped rolling," Mrs Grygoruk said.
"The doctors said they would have been hurting her head to roll with them on.
"She never met a milestone after that."
Jazmin's health deteriorated, and her parents took her to doctors and specialists over and over again, searching for answers.
Mrs Grygoruk said after a year and a half of tests and appointments, she received a call from a specialist in Brisbane.
"We got a phone call saying they think they might know what's wrong with her," the Mountain Creek mum said.
"When I got there he just handed me a textbook and said 'read that paragraph, that's what we think she has'."
The monster that was robbing their precious daughter of her health finally had a name - infantile refsum disease.
"It's a recessive, hereditary, degenerative, terminal disease that breaks down the nervous system," Mrs Grygoruk said.
"They said she'd be dead before she was three."
Jazmin died in 1998 when she was eight.
Although neither of Jazmin's parents had any family history of illness, Mrs Grygoruk said they both had to be carriers of the gene to pass it on.
"There's no way in the world that we thought that we'd both be carriers for this extremely rare disease.
"I was told at one stage (the odds) were one in 20 million."
Darilyn and John have two other children and neither have infantile refsum disease.
"They're both going to have to have genetic testing before they have families," Mrs Grygoruk said.
August 4 is Jeans for Genes Day. In memory of their daughter, the Grygoruks aim to raise $5000 towards research that wasn't available to them in the 1990s.
For parents battling health conditions or genetic disorders, Mrs Grygoruk has one, simple message - don't stop fighting.
"If you think there's something wrong, fight until you get an answer," she said.
"If they say nothing is going to help - don't believe them. Do everything in your power."
To donate to the Grygoruk's Jeans for Genes Day fund, visit https://inmemory-cmri.everydayhero.com/au/darilyn.
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