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.

Saturday, August 21, 2010

Rotary Clubs Renovation Rescue

Wonderful news, the Combined Rotary Clubs of Mount Warning AM, Murwillumbah Central and Murwillumbah have joined forces to conduct a renovation rescue on our home. Painting, repairs, and extension with some "special needs" alterations to help care for and manage Artemissia.

The renovation rescue will be covered by Channel 7 News.

The combined Rotary Clubs are looking for assistance with building products, windows, paint, volunteers or any help that can be spared.

Local businesses are rallying to the cause already, Richard Cuskelly from Duraplas Tweed has supplied a water tank being installed by plumber Phil, and, David Bjorkland from Beyond Building Technologies has arranged for a grid connected solar electricity system to be installed.
Both donations wil help us with the high daily costs of power and water, and, help the environment.
We are so grateful for the care and support that we have been shown, from our friends and next door neighbours to total strangers.

We would not have made it this far without all you Angels and pray for your continued care and prayer.
If you can provide the combined Rotary Clubs with any assistance for this project then please contact Lyn Sullivan,the President, Rotary Club of Mount Warning AM on 02 6677 9071 or Dennis Hallworth on 02 6677 9302.
Our Thanks to Anne Simpson, Chris Chrisostomos, Jack and all the members of the Combined Rotary Clubs for their efforts,this is wonderful news and much needed.

Even in our darkest moments Angels have shone and lit our way.
Thank you all for sharing your light.

Thursday, August 19, 2010

"The Pink Dress" author unknown

Don't let your day go on without reading this first, no matter How busy you may be!!

The Pink Dress
There was this little girl sitting by herself in the park.
Everyone passed by her and never stopped to see why she looked so sad.
Dressed in a worn pink dress, barefoot and dirty, the girl just sat and watched the people go by.
She never tried to speak.
She never said a word.
Many people passed by her,but no one would stop.
The next day I decided to go back to the park in curiosity to see If the little girl would still be there.
Yes, she was there, right in the very spot where she was yesterday, and still with the same sad look in in her eyes
Today I was to make my own move and walk over to the little girl.
For as we all know, a park full of strange people is not a place for young children to play alone.
As I got closer I could see the back of the little girl's dress.
It was grotesquely shaped.
I figured that was the reason people just passed by and made no effort to speak to her.
Deformities are a low blow to our society and, heaven forbid if you make a step toward assisting someone who is different.
As I got closer, the little girl lowered her eyes slightly to avoid my intent stare.
As I approached her, I could see the shape of her back more clearly.
She was grotesquely shaped in a humped over form.

I smiled to let her know it was OK; I was there to help, to talk.

I sat down beside her and opened with a simple, 'Hello'

The little girl acted shocked, and stammered a 'hi '; after a long stare into my eyes.

I smiled and she shyly smiled back.

We talked until darkness fell and the park was completely empty.
I asked the girl why she was so sad.
The little girl looked at me with a sad face said, 'Because, I'm different...'
I immediately said, 'That you are!'; and smiled.
The little girl acted even sadder and said, 'know.'
'Little girl,' I said, 'you remind me of an angel, sweet and innocent.'
She looked at me and smiled, then slowly she got
to her feet and Said, 'Really?'

'Yes, you're like a little Guardian Angel sent to watch over all the people walking by.'

She nodded her head yes, and smiled.
With that she opened the back of her pink dress
and allowed her Wings to spread, then she said 'I am.'

'I'm your Guardian Angel,' with a twinkle in her eye.

I was speechless -- sure I was seeing things.

She said, 'For once you thought of someone other than yourself.

My job here is done'.

I got to my feet and said, 'Wait, why did no one stop to help an Angel?'
She looked at me, smiled, and said, 'You're the only one that could see me,' and then she was gone.

And with that, my life was changed dramatically.

So, when you think you're all you have, remember, your angel is Always watching over you.

Show this to everyone that means anything at all to you.

Like the story says, we all need someone...

And, every one of your friends is an Angel in their own way.

The value of a friend is measured in the heart.

I hope your Guardian Angel watches over you always.

This is a perfect story as I met my Guardian Angel Artemissia last year and I would like to dedicate this lovely story to her. Angels surround us.

Monday, August 16, 2010

Team A member Honey on the Road, doing what she can to help us.

You just have to Love her, Honey is very special, just like her parents Terry and Julia Dickson from Jimboomba. Terry a travelling Lion(LionsonOz)and Julia travel to shows in New South Wales, Queensland and Victoria selling Boots and Clobber from their T.J.'s stand while Honey raises what she can to help us. Terry, Julia and Honey have come into our lives, very real Angels, simply so understanding, amazing and caring, having these angels in our life is such a blessing. The world needs a lesson in love and these Angels make the best teachers.
Team A, Terry and Julia with Honey will be at:

Jondaryan Woolshed 20th-29th August,

Beaudesert Show 3rd-4th September,

Nanango Country Music Festival 10th-12th September,

Millmerran 28th September-2 October,

Kyogle Show 7th-10th October,

Beaudesert Showground 14th-17th October,

Warwick Gold Cup and Rodeo 28th-31st October.

Tuesday Nov 2nd to Sunday night Nov 7th Mud, Bulls and Music at Jimna.

Sat 13th to Monday Nov 22nd at a Beaudesert 4 WD track and then Monday to Pittsworth Country Music.

Friday Nov 26th to Dec 10th at Broadwater Haven Fishing holiday.

Guyra January 12th 2011

Drop in and see the Team Artemissia Angels.