“On 27 January 2008, Isabella’s eyes crossed,” recalls Dr Robert De Rose, an HIV/AIDS researcher at the Peter Doherty Institute for Infection and Immunity at the University of Melbourne. Dr De Rose is also a co-founder of the Isabella and Marcus Paediatric Brainstem Tumour Fund – a non-profit charity organisation which supports research into a rare and deadly form of brain cancer.
Dr De Rose and his family were about to embark on a harrowing journey. Their five-year-old daughter Isabella (pictured right) was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG): a cancer of the brainstem that only occurs in children and is terminal upon diagnosis.
The brainstem sits at the top of the spine, and is the passage through which all the nerve tracts from the spinal cord enter the brain. As the tumour grows, so do the symptoms – which become increasingly severe and debilitating, affecting motor functions as well as essential functions like swallowing, breathing and movement of the eyes.