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.

Thursday, June 16, 2011

3 more sleeps

I've been helping dad lots lately, see, me doing the washing and me working at 'Coolangatta Rocks On' festival. It was raining so dad made sure I was warm and snug, the beanie worked really well. Our friends Jony and Jo had stall there so we gave them a hand and watched the world cruising by.

Great news, Uncle Terry and Aunty Julia are coming to visit us on sunday. They are both very special, Yay! How cool is that!! 3 more sleeps!!!

Tuesday, June 14, 2011

At last, sun shine.

The sun shone on us today out at Eviron, Artemissia's resting place. I couldn't resist taking a short video to show how you beautiful and peaceful it really is. It's hard but you come to terms with it, realise it, and accept it. The hardest journey for any person. Words don't cut it!

Sunday, June 5, 2011

Good work dad!

What a good job dad has done again. Today dad and I went back to our old home to mow the lawns and tidy the yard. I used to lay inside while dad did the garden. I could still see him work through my "mind's eye". He knew that one day I would be able to be outside, play and enjoy the beauty here, sharing it together. Now I can be outside, I can be everywhere. I'm so lucky and proud, dad takes me with him always. Some mornings we leave before dawn and dad rugs me up so I don't get cold on our journey, we even use the car heater which I just love. Things have been hard and it looks like the house will be lost. Dad is sad about that, but strong, and I will help him rebuild, and heal his heart. At least we still have each other. I am so proud that my dad will never leave me. You must admit, I'm the luckiest little princess hey! Mum has gone but now I visit her and help soothe her pain everyday.

P.S. Dad is wanting to hold a DisabiliTEA in august to help the Every Australian Counts Campaign to push for the proposed National Disability Insurance Scheme. Maybe I can help others and bake some cakes!
Please check it out at www.everyaustraliancounts.com.au

Thursday, June 2, 2011

Reality bites

Woke up this morning, reality bites again, you're not here! I shut my eyes wanting this nightmare to go away. Nothing works, I must again face another day. Around the room I go, kissing your image, your eyes, your soft cheeks. We pray together for all and give thanks??? Turn on this screen, your smiling face pops up and warms me to another day. Looking now at so many of our new friends and their families, I feel their pain and agony, I see their strength shining through, my heart knots, fingers seize, I can't speak. We are glad to know all these very special beings. This week has been much harder than last. More highs and lows than all the rollercoasters on this planet. Destination unknown, just hold onto your heart and hat!