Our Journey

I am Alex, the father of a beautiful baby daughter with Sandhoff Disease, a rare form of Lysosomal storage disease, similar to the Leukodystrophy in Lorenzo's Oil (the movie). Artemissia was the only known case in Australia. At 6 months old the first signs of this aggressive disease began to emerge. We went to the doctors thinking it was a reaction to immunisation but no-one knew. We waited to see a neurologist but the disease was advancing. One day before her 1st birthday she went floppy. Our nightmare had begun, and even though Artemissia passed away more than 2 years later on the 13th of December 2010, the nightmare continues today. A family no more. Here you see a father's journal, emotions and thoughts. barely a glimpse of the reality, but enough.

Thursday, January 27, 2011


Artemissia's memorial on Saturday was beautiful. Thank You to everyone that attended. Being surrounded by family, friends and frangipanis, Artemissia must truly be in heaven. Our own Father Romanos led us in prayer and song then we shared the traditional Kolivo. Artemissia looking down, why we are so sad? we will always miss her, little Artemissia you taught us so much.

I am still here
I am still real
You are all dear
Hold me close
Your hearts to heal

Thursday, January 13, 2011

Memorial Service

We would like to warmly invite everyone to attend the memorial service in honour of Artemissia's life. Father Romanos from our Greek Orthodox Church of Saint Anna will be conducting the ceremony. The service will be held at 11am NSW (10am QLD) the Tweed Botanical Gardens Cemetary at Eviron on saturday the 22nd of January 2011.