Jacinta's story

All of Jacinta’s ribs were fractured before she was born.

Her parents, Lauren and Joe, were told to expect the worst at their 32-week pregnancy scan when their little girl was diagnosed with Osteogenesis Imperfecta, a rare and incurable genetic condition also known as Brittle Bone Disease.

 “It was a really scary time. We were just waiting, not really knowing what would happen at the end of it all, but in true Jazzy form she proved everyone wrong and exceeded everyone’s expectations,” Lauren said.

Jacinta’s condition is extreme. To date she has endured treatment for more than 100 fractures. Every breath or movement can cause a bone to break and Jacinta also battles muscle weakness and growth and spinal issues.

For a little girl with so many challenges, Jazzy— as her parents call her—is full of life and high spirits. Now five years old, she lets little stand in her way, and despite being unable to walk, Jacinta loves playing AFL and climbing trees. She continues to defy the odds. 

Her parents are in awe of their little girl’s strength and courage.

“Jazzy can do everything that everybody else does— sometimes it just takes a bit more creativity,” Lauren said.

The Children’s Hospital at Westmead has become a home-away-from-home for Jacinta and her family. Every month, she visits the Hospital to receive bone-strengthening medication and has regular physiotherapy, occupational therapy, hydrotherapy, rehabilitation and orthopaedic appointments. This is coupled with the unavoidable hospital admissions, including a recent four-month stay.

Doctors and researchers are working to find better treatments and cures for Jacinta’s condition, among many other conditions which are as of yet incurable, and are hopeful for the future.

“Jacinta has been lucky enough to be born into a time when there's so much technology and opportunity for new treatments. We wouldn’t be where we are today without the support of the Hospital,” Lauren said.

With ongoing medical care and treatment, it is hoped that Jacinta’s dream to become a scientist will come true.

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