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, March 27, 2011

Little Angels Oscar and Aiden

Artemissia and I would like to thank all the wonderful people that supported and showed inspirational care through this whole experience.
Especially two young brothers that had saved their pocket money to give Artemissia a special christmas gift, even though Artemissia did not make it to christmas.
Aiden (9 years old) and Oscar (5 years old) Dickson, both insisted that their contribution still help towards the plaque.
With this tear rolling down my cheek Artemissia & I thank you both. Your mum, dad, grandparents Terry and Julia must be so proud of you.
Maybe the world is becoming a better place and we are blessed to know you all.

Thursday, March 24, 2011

Artemissia's Plaque

Today another milestone was overcome as I finalised the arrangements for Artemissia's plaque at the Tweed Botanical Cemetery.
Words have been hard to find to express heartfelt love and pain.
Artemissia gave us the strength and courage to endure, friends gave me the strength of their wisdom, and with that strength the words flow.
Thanks to you Artemissia, your family, and your special Team A.
We love you unconditionally for eternity.

Sunday, March 13, 2011

Time moves on but the pain remains

It has now been only 3 months since Artemissia passed away and the pain just keeps growing.
Artemissia was the centre of our universe as all parents would understand.
Every day I take out fresh frangipani flowers, Artemissia's favourite. I can see her face as she takes in the scent of her flowers, relaxing in the beauty of the moment, I miss her so much, little fingers in my hand, gently teasing her soft eyebrows. All Artemissia gave and lived for, was pure unconditional love.