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, June 16, 2011

3 more sleeps














I've been helping dad lots lately, see, me doing the washing and me working at 'Coolangatta Rocks On' festival. It was raining so dad made sure I was warm and snug, the beanie worked really well. Our friends Jony and Jo had stall there so we gave them a hand and watched the world cruising by.

Great news, Uncle Terry and Aunty Julia are coming to visit us on sunday. They are both very special, Yay! How cool is that!! 3 more sleeps!!!

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