Leukodystrophy
Completely blown away this afternoon while watching Australian Story's Mission Massimo. Today's story was of a small boy, Massimo, diagnosed at 12 months of age with leukodystrophy - a degenerative neurological disease - and his parents' quest to save him. Excellent viewing about this tragedy and the courage and determination that meets it head on. It caught my attention because my novel, Raising Hope, is on the same theme - baby Amelia is diagnosed at a few months of age; my story follows her journey and that of her desperate parents as they negotiate the difficult terrain of powerlessness as they watch their child's life begin to dwindle. An important issue that doesn't get much public attention. This will be self-evident if you have never heard of leukodystrophy. Up to the final edit now and working on the next step of having it published. Watch Australian Story in a small show of support to learn a little about this little understood condition and what some courageous tots must bear.