Little Lilly has rare 1p36deletion syndrome

Natasha Moore and Mat Cook with their daughter Lilly. The couple have started a GoFundMe campaign to raise money for a bigger car to transport Lilly.
Natasha Moore and Mat Cook with their daughter Lilly. The couple have started a GoFundMe campaign to raise money for a bigger car to transport Lilly. Mike Knott BUN200417LILLY4

AS CHILDHOOD sweet hearts two Bundaberg parents never knew the battle they would face when they unexpectedly fell pregnant four years ago.

Matt Cook and Natasha Moore said from the beginning their only child wasn't a typical bundle of joy, but as parents they would be there for her, no matter what.

After various genetic testing doctors confirmed sweet little Lilly had a rare genetic disorder called 1p36deletion syndrome.

The syndrome is a congenital genetic disorder with symptoms which may vary depending on the exact location of the chromosomal deletion, and is similar to cerebral palsy.

Testing showed Mr Cook had a genetic translocation, which means a small section of genetic information has been misplaced from chromosome 1 to chromosome 2, leaving a gap where it should be.

"Because Lilly inherited this genetic change she will likely need assistance from us well into her adult life," Ms Moore said.

"But for now she is just Lilly, a bubbly, cheeky and happy four year old girl who melts the hearts of anyone who spends time with her."

As a parent of a disabled child its a hard path to go down, but Lilly's mum and dad have taken it one step at a time to do the best they can independently for their little girl.

Lilly's genetic differences have affected her in many ways, she is non verbal and currently non mobile.

Her parents know the struggle and that it will not end any time soon and feel they now need to lose their independence and ask for help.

"We are very hard workers and have been saving for a more suitable vehicle," Ms Moore said.

"But with only one of us working while the other is a carer this is quite a difficult task when you consider the financial strain incurred by this already."

At the moment Lilly is learning to stand and walk with the help of a specialised walking frame and uses a custom wheelchair-pram.

"These items are not small by any means, her pram literally needs to be separated in two in order to fit it into a car boot," she said.

"Being four years old you can imagine the size and weight of her and its increasingly difficult to lift her in and out of our family car."

The family have set up a GoFundMe page to buy a bigger car for Lilly's equipment and to lessen the strain of lifting her in and out.

Donation can be at

Topics:  bundaberg editors picks gofundme

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