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.

Sunday, April 29, 2012

Our slice of heaven

This last few months has been a blur, after Artemissia's 4th I just switched off the world....
Only staying in touch occassionally, for those that needed easily found.
Driven to find a place to be at peace, grow our flowers and help where needed.
I know Artemissia brought me to this "Slice of Heaven", our new nursery at Uki near Mount Warning.
It's totally magical with mountains, creeks, river, waterfalls and beautiful gardens all backing onto Wollumbin National Park. It has been abandoned for a few years and my mission is to restore it and have come a long way in the last 2 months. All our frangipanis are here and slowly the nursery is coming back to Life.
Hard work alone mostly and with the occassional hand from my brother and friends much has been achieved. A few mishaps and more kicks below the belt by mother universe, and, still standing.
We are blessed by the millenia of beautiful spirits of mothers going about their "Women's Business" in the caves above, they cast their protective spells over us, bringing love and warmth all around, pure magic.

Time to Join the world again.