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.

Monday, March 29, 2010

update from mum

We continue on our journey of being parents, caregivers, supporters
to our beautiful daughter and grand daughter to my mum , Artemissia.
She is everything I could want in a daughter.She is strength, beauty, patience, perserverance and love.
Eventually we will get her nasal tube out and get a button put in so she can be
more comfortable and for her feed and drugs to be administered.
She is making more noises vocally, little grunts and grizzles and little cries. She talks more with her eyes when she looks at you in pure frustration of what she is experiencing or feeling. All we can do is try to decipher her needs in her body language that she is able to express and even that is limited.
We love her for all that she is and all that she continues to teach us.
That is that love comes in many shades and degrees of color not just black and white.
Soon we hope to go and see "Amma" a being of love that travels and embraces the world. We look forward to meeting her and for her to meet Artemissia.

Sunday, March 21, 2010

update~ The Book

We have had a article in Take 5 this week. Dated March 24 2010 Issue No 12.
Pages 10 and 11. There are some really good pics too.

I have also completed a book I have written called Artemissia~ A Spiritual Awakening.
It is the story of our physical, emotional and psychological journey that transforms into a spiritual understanding and enlightenment.
Also the story of how through our own experiences we are all capable of reaching exactly the same heights of love in times of sadness or despair.
I hope this book will lift up peoples view points or perspectives of the reality that we live in, or beleive that we live in.
I hope that it will make you cry tears of happiness and also tears of inspiration and joy.
I think that we have alot of reasons to feel optimistic in life and I choose to share
these feelings of the heart with you the reader.

I am in the midst of finding an agent for my writings. I know the right one will come.

We continue on our journey surrounded by love of our daughter's beautiful spirit.
love and light xoxox Kelly