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.

Wednesday, July 27, 2011

Artemissia like every other Australian still counts!

Artemissia helping dad get ready to go out and gather support for the proposed new National Disability Insurance Scheme. When the mail arrived she was so excited and couldn't wait to open the bag. It was like a treasure chest, postcards, stickers and flyers. Artemissia has friends that are willing to help us collect signatures, she like every other Australian still counts!

The NDIS will make it easier for disabled, aged, palliative and sick people to access essential care, support, equipment, training and much needed respite.
The Northern Rivers community has been crying out for help for many years and now at last a proposal that will help so many residents that have been, and, are still suffering in silent anguish.
The Health system has for too long needed change to support all people regardless of their disabilities, and their families that provide care 24/7. Artemissia was palliative, in an ICU state, sent home to die. We fought Artemissia's disease ourselves with little to no assistance for 2 years and nearly had it beat, but we still "slipped through the cracks". We had no respite for the first 12 months, even then it was unstable, access to equipment and services were heavily bound by departmental red tape. Initially going from hospital to hospital (even Brisbane) on my own steam for syringes, lifesaving suction machines, hoses and tubes etc. Our life and home were far from everyday Australia, a nightmare. Our nightmare has ended but the pain from the experience has left us scarred forever.

The proposed NDIS would fund long-term, high-quality care and support for about 360,000 Australians with disabilities. The Northern Rivers has significant holes in respite services designed to provide back-up to people – usually family members – who often sacrifice their own quality of life to make the most of someone else’s.
We have a voice and by using it we can make sure the Federal Government accepts the recommendations of the Productivity Commission to introduce the NDIS.

As part of the campaign there will be 866 national DisabiliTEAs, morning tea parties on August 2, to promote the scheme. In the Northern Rivers there will be one in Alstonville at 253 Wardell Road held by Brione Steele. Another held by Tweed Valley Respite Services at Dungay. Petition forms will also be located at the Tweed Palliative Support op-shop in Murwillumbah, Tom's Pies in Mullumbimby, Valley Way Cafe across from the Murwillumbah railway station.

The people of Australia and the Northern Rivers, have the power and numbers to help push the scheme to reality.

Who will it be next? we didn't have a clue what we were going to go through.

Please support the campaign, all you need to do is voice your support by calling 02 9256 3106 or online at http://www.everyaustraliancounts.com.au/.

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