“If sharing Genevieve’s story means another family doesn’t have to go through what we did, I’ll keep sharing it.” — Evie, Genevieve’s mum

Every Christmas, Evie hangs three baubles on her tree: two for her sons, and one for Genevieve, her firstborn daughter who lived for just 13 days. 

Genevieve was born with Congenital Myotonic Dystrophy, a rare and devastating genetic disease with no cure.

For Evie and her husband, those 13 days were filled with love, heartbreak, and the hope that one day, other parents wouldn’t have to face the same pain.

At Children’s Medical Research Institute, researchers are driven by stories like Genevieve’s, working every day to discover cures that could spare other families the same heartbreak.

This research doesn’t stop at Christmas, which is why we urgently need your help to raise vital funds so that we can continue ground-breaking research that could save children’s lives.

Genetic disease robs Australian kids of their childhood

Genetic disease is the leading cause of death in children under four.

With 1 in 20 Australian children born with a genetic disease or birth defect, too many children are robbed of their childhood, and too many parents are forced to face the unimaginable.

At Children’s Medical Research Institute, our scientists are working to change that. From childhood cancers to genetic diseases, we are leading research that gives more children the chance to live full and healthy lives.

The journey from lab discovery to real-life impact is long, but every donation helps shorten that path. 

Your gift this Christmas can help children with genetic conditions reach milestones that were once impossible.

From families to researchers, every story matters.

Valentina was born with a rare genetic condition so uncommon it’s been reported in only a few hundred people worldwide.The condition affects her ability to move, but research at CMRI gives her family hope for the future.

For some children, the greatest gift isn’t found under a tree. It’s being made in our labs.

For thirty years, CMRI’s Gene Therapy Research Unit has been at the forefront of discoveries. Associate Professor Samantha Ginn has witnessed how far science has come, from early experiments to treatments that are now saving lives. “Gene therapy is no longer just an idea. It’s changing lives,” she says. “But there are still too many children without options.”

When Alessia was just two weeks old, her parents learned she had Spinal Muscular Atrophy, a fatal genetic disease. Without treatment, she wouldn’t live to see her second birthday.

Alessia became the first baby in NSW to receive life-saving treatment. Now she’s a thriving seven-year-old, living the childhood once thought impossible.

Together, we can give children the chance to grow up healthy.

With your help, we can create a future where more children grow, play, and reach milestones once thought impossible, and more families get to share those precious moments together.

This Christmas, give more than a present. Give children their childhood.