kids

Little Ellie has Noonan syndrome, an illness so rare you've probably never heard of it.

Ellie Madigan is three-years-old. She has a bright smile and a bubbly personality. Ellie and her family live in a small town in Western Australia. She has two older brothers, so she’s never short of someone to play with.

But Ellie is little. Really little.

Ellie is out to prove that despite her size, she is a strong fighter. Image supplied.

She is in the third percentile for weight and measures below 0.3 percentile for height. When she was just four months old, Ellie weighed 300 grams less than her birth weight.

This growth deficiency is a side effect of Noonan syndrome, something you probably haven't ever heard of before.

Noonan syndrome is a genetic condition which includes heart abnormalities and characteristic facial features. About one third of affected children have a mild intellectual disability, however symptoms vary from relatively mild to severe.

There is an estimated one in 1,000 - 5,000 children who are diagnosed with Noonan syndrome, however sadly, there is currently no known cure.

It took a year and a half to diagnose Ellie.

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Ellie Madigan, flower girl on a special day. Image supplied.

“While Ellie is fortunate with her diagnosis, there are so many other children out there with varying degrees who are severely mentally disabled,” says her mother, Natalie.

Ellie has become so used to being fed by a naso-gastric tube after being in and out of hospital since she was four weeks old, that she is now hesitant to eat solid foods and has only recently started chewing and eating proper meals.

“Ellie undergoes constant Physio and Occupational Therapy to try and gain greater control over her muscles, as she suffers from low muscle toning. It’s a side effect of Noonan’s syndrome, making everyday tasks, like walking and sitting, difficult. She is affected by global developmental delay (GDD), being 18 months behind her peers on the developmental side, therefore she doesn't know how to interact with other children her own age.” said Natalie.

In support of Ellie, Natalie has signed up to the FIT in your Jeans for Genes program this year to raise much needed funds for research into childhood diseases.

Double denim day dance. #fashion #fashun #fasssshun #canadiantuxedo

A video posted by moniquebowley (@moniquebowley) on

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At Mamamia, we're all about jeans and we're out to prove that there's no such thing as too much denim. 

Jeans for Genes Day raises much need funds for the Children's Medical Research Institute, an independent organisation committed to unlocking the mysteries of disease through investigation of conditions such as birth defects, cancer, and epilepsy. Its philosophy is that major advances in prevention and treatment come from research into the fundamental processes of life.

One in twenty Australian children is born with some kind of genetic disease or congenital abnormality, and many more develop epilepsy or cancer. CMRI conducts fundamental genetic research to understand the genes important for health and development, and the underlying causes of diseases such as these.

Despite the challenges, Ellie remains a bright and happy three-year- old playing amongst her two older brothers and having started swimming lessons this year. Ellie is out to prove that despite her size, she is a strong fighter.

Wanna do your bit? This year Australian workplaces and schools will unite in a sea of denim to show their support on Friday, 5th August. For the first time this year Jeans for Genes have included unique donate function - 'text to donate'. Aussies can simply text 'jeans' to 1997 6484 and $5 will automatically be added to their phone bill. The donation will go straight to Jeans for Genes. Or you can donate here.

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