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, June 19, 2011

My Lei looks so good

Two very special angels came to visit us today. Uncle Terry and Aunty Julia with Honey and Gracie. It was a perfect winter's day, with lots of sunshine, love and prezzies. New carved frangipani flowers and a handwoven sleeping bag for me to snuggle up in.My Lei looks so good, and, I just love my soft and warm sleeping bag 'cos Aunty Julia made it all herself. Uncle Terry brought his cure for Tiny Dancer's hand and he fixed it like magic, a drop of part A and a sprinkle of part B.

Today was simply "the best", my angels visited us, we loved it, see, Miracles Do Happen.







1 comment:

  1. Precious Princess.
    We came to visit you on Sunday at your special place.It is 6 months since you went to stay with the other gumnut babies.It was both beautiful and sad. You are in such a lovely environment. Your plaque is just perfect.
    We brought Honey and Gracie to say hello. I think you and Grace were playing hide and seek in the photo as I see her tail behind Honey.
    Your Dad read you the Princess story and we had a little chat. I visited your new friends. I bet you get up to such mischief, laughing and playing together when the park is quiet.Such special friends.
    I didn't cry while there as I could tell you are happy and safe but we do miss you so and the tears pour now I am home.
    We brought some wooden frangipani flowers so you can have flowers everyday until your Dad can bring you fresh frangipanis again.
    I wish we lived closer so we could come to visit more often but I know you are loved and safe till we can come again. In between our hearts are in touch. Love you.

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