Recently I was drawn to two articles in the media and in particular the first which featured on ABC Australian Story this month ‘Cracking The Code’: http://www.abc.net.au/austory/specials/crackingthecode/default.htm.
Stephen and Sally Damiani’s first born baby son Massimo had a type of Leukodystrophy, the only problem was this was an uncategorised form, and most cases are genetic. This lead the father Stephen on a pain-staking long journey to delve further into human genomes, and to map his genome and his wife’s. With the help of a Genetic Scientist here in Australia, after four very long years this lead to a most remarkable discovery.
This story is a case of a father’s undying love for his son, his wife and his quest to find answers, a diagnosis and potential treatment for his son and other children. An amazing breakthrough which may just change how people are treated for many other types of diseases in the future.
For more information go to Mission Massimo Foundation
Australian Leukodystrophy Support Group Melbourne
‘4 in 3’ The Mason Minniss Fund
The next story hits home in a big way, especially when it is a disease that claimed your child’s life!
Evander was just one day old when he was diagnosed with Neuroblastoma. Six months of Chemotherapy shrank the tumour, but there was damage to his spinal cord, now Evander is likely to be a paraplegic. His family have set up a fund to allow donations to continue to provide equipment and therapies for Evander and other children. His family are continuing other forms of intensive physiotherapy like ‘Locomotor Training’ as Evander also has a spinal cord injury but does not qualify for the government’s ‘Better Start Initiative.’
Both of these families highlight my catch phrase which is ‘ordinary people doing extraordinary things’. They have pushed the boundaries with their hope, spirit, courage and persistence as they continue their journeys to find better outcomes for their children.