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, September 15, 2011

Artemissia's 4th Birthday

Artemissia's 4th birthday on monday was just the best. We spent the day together and the sun simply shone all day. Our friend David joined us and we had a little party, opened Artemissia's presents and lit the candles on the beautiful frangipani cakes specially made by aunty Julia. The little fairies and angels found their home hanging on the tree, always there ready to play and guard over our precious baby.

A perfect birthday layout for our beautiful princess. See Artemissia's new frangipani bag, handmade with lotsa love by aunty Julia so we can carry all Artemissia's toys, flowers and very special book.

We are blessed by our special angels.

How relaxing does that look! Surrounded by sunshine and flowers.


Yum, the cakes tasted as good as they look.

Artemissia and Tiny Dancer just kicked back and soaked up the rays sending out the special love that only they can.

Thank you, Aunty Julia, Uncle Terry and David for your gifts, care and support.

Thanks to everyone that remembered and shared a moment with us to make it a great day.