Leukodystrophy Resource and Research Organisation Inc. | Incorporated No. IA41033

Our Story

Brendan Wyborn was born in Townsville Queensland Australia on the 7th of March 1988. His life was as any normal little boy until he was about 8 years old. He moved to live in Hervey Bay Queensland and enjoyed fishing, playing cricket, his older Sister Emma and of course his family and friends. His life started to change when his known standards for behaviour, schooling and general wellbeing decreased. After many misdiagnoses and change of doctors he was finally correctly diagnosed, on the 10th of November 1997 at the Royal Children’s Hospital Brisbane ,with Adrenoleukodystrophy (ALD).

His prognosis was poor as this destroyer of our young boys had rapidly advanced and he was not given long to live. He died in the Hervey Bay Hospital on the morning of Saturday the 17th of July 1999.

From the date of his diagnosis to his death the Wyborn family encountered the entire range of physical, emotional , mental and spiritual experiences that occur in the inheritable world of incurable, progressive genetic neurodegenerative conditions. These experiences included some of the following; medical misdiagnoses and condescension, unending needless battles with bureaucracy, school systems, community services and experts who have vaguely heard of the condition Leukodystrophy but fear admission of this knowledge and pretend to understand it. The introduction to the Hospital system and the rigidity of the medical model as opposed to the flexibility that is required to treat individual terminally ill children and adults.

This painful procession did produce many participants who showed compassion, love and understanding and who broadened our experiences and took some of the load off our shoulders.

It is at the point that we believe our families start to realise the total uncertainty of the future and try by some emotionally controlled osmosis to absorb the enormity of what lies ahead. The experiences of the Wyborn family convinced Bob the he needed to play a significant role in enhancing the system by working proactively in this field. Since 1999 Bob has been actively involved in the world of Leukodystrophy in both Australasia and Overseas and has a vast knowledge of the day to day treatments of the Leukodystrophies, their individualistic problems, their relevant Global experts and the current research that is being undertaken for them.

Bob recently decided that it was time to increase the intensity of his work for the families and start his own organisations that will operate at both Australasian and Global levels. He is well known overseas as the Australasian Leukodystrophy Foundation and in Australasia as the Leukodystrophy Resource & Research Organisation Inc. The web content is the same.