Finding cures for children's genetic diseases

Support Us

Who You're Helping

1 in 20 children is born with a birth defect or genetic disease, and over 600 children are diagnosed with cancer every year.

They are more than numbers, they are people. Here are a few of their stories...


Amy is the "1 in every 10,000" born with the rare neurodevelopmental disorder William’s Syndrome.


At 16 months of age, Bella was officially diagnosed with DiGeorge syndrome.


As a neonatal nurse, Nikki Rabold-Cowley knew something wasn’t right 30 weeks into her pregnancy.


Like so many first time mothers, Rhiannon had nothing but gut instinct to tell her that something was wrong when baby Cooper was born.


When Ella was just 3 years old her parents (Kath and Dave) started to notice that she was not gaining weight.


Ellie was born a happy and healthy beautiful girl but just 4 weeks into her life things started to change.


Born at just 25 1/2 weeks and weighing a mere 597 grams, she was given a 5 percent chance of survival...


Kathryn and Daniel Pym, like any expecting parents, dreamt of a perfectly healthy start to life for their first child.


Fred was only 7 months old when he began aggressive chemotherapy treatments for an atypical tumour that no one had seen before...

Henry and Rosalie

Henry and Rosalie are brother and sister with a very rare disorder known as LCHAD.


Indiana Dawkins was 10 days old when mother, Megan, and father, Josh noticed something wasn’t quite right..


Diagnosed with 2q37 deletion and 11q24.3 duplication, Joel Short is determined not to let genetic disease stand in the way of big dreams.


When Josh was just 4 months old, his mum, Kylie, noticed he wasn’t feeding properly.


Livia’s family first started to notice that something was wrong when Livia was only a few weeks old.


Madeline was born OTC deficiency and before her first birthday the doctors said she needed a liver transplant.


When Max was just a few months old, he was diagnosed with Shwachman-Diamond Syndrome.


Millie, who is almost four, was born with Adrenal Insufficiency, which is a hormonal condition that affects the adrenal system.


When Phoenix was born, his mum, Tenealle had no idea that anything was wrong.


Four-year-old Naomi is a beautiful little girl diagnosed with SATB2 Associated Syndrome (SAS), a rare genetic syndrome.


Sasha realised something wasn’t right when her little boy, Quinn, couldn’t turn his head at the sound of his name.


Riley can have 46 absence seizures in 4 hours, and that is just a normal day.


Her two-first born children were a blessing to new mum, Bec, however, almost instantly she noticed something was wrong with Ruby.


At 33 weeks into her pregnancy, Naomi Sheldon was told that her unborn daughter’s right kidney was larger than the left.