Sunday, 24 February 2013

Lots of links and a MASSIVE request

It is with a very tired mind and body that I would like to try my best to articulate the following entry.
I have been working a lot over the last 2 weeks.
There are more weeks to come.
I am relieving for a very competent and wonderful person at endota.
My voice is the first one you hear if you ring the "support centre" (head office).
My day is spent completing and sending the many emails requesting "gift vouchers" from the endota website.
The two responsibilities mentioned above are just 2 amongst many duties.......but the main ones.

This suburban mum, (yes, with a disabled child), must also leave in the mornings and come home at night with a household STILL to run.
Washloads, Dishes, children to organise, food shop and house to clean.......outside of work hours.
I have a new respect for what you juggle.
And I only work/travel during school hours.
There is absolutely NO WAY I could work full time hours and have the kids "looked after".

Below is the link for the company I now work for

My travel time is currently 100 minutes per day so I will be very happy when they relocate the office to somewhere local in a few weeks time.

Amelia is still doing fabulously.
So happy, so content.
Unfortunately we had a horrible fall on Monday night that created bruises and grazes all over one side of her face and knee, but she has recovered and is still so happy....... YAY !!!!

For the first time in 3 years I am having to discipline her.
It is quite a shock when she does/says something inappropriate.
I quite often have to hide my giggles.
Amelia has definately got some spunk lately !!!

Recently I was shown a magnificent DVD made by The AT Children's Project in America.
I absolutely love it because it has the faces of AT kids that I am in regular contact with.
We are so lucky to have the Internet so that we can connect with so many around the world who are going through exactly the same as what we are.
The song is written by a young man with AT and sung by a well known American singer.
Have a look at the link below.......

The families are just like us.
People who have been handed this massive challenge and are now just REALLY trying to "live life".

In Australia we are also lucky to have our own organisation trying to find treatment, a cure.....ANYTHING.
The Melbourne Director of BrAshA-T recently made this very personal DVD to try and explain the heartache for everyone living with Ataxia Telangiectasia.

The following link shows a DVD made locally.

Finally I have a very huge request.

I would like you to read the flyer that I have posted below.
I would like for you to consider coming and joining Scott, Myself, Amelia and Tom at this very beautiful event.
A picnic and children's movie under the stars.

Amelia has Ataxia Telangiectasia.
So do approximately 35 other children in Australia.

All of us are people that could be your friend, neighbour or work colleague.
We are just "average, everyday" people.
But we have given birth (or adopted) the most magnificent children and have been told what no one wants to hear about their child.

Their life will be short.

The hope of treatment, cure.....ANYTHING is always there.

BrAshA-T are the only group in Australia that are trying to save our kids.

By attending this fun, supportive and humbling night, the purchase of your ticket/s will contribute to what we all HOPE is in our kids future....... A Cure.

Please let me know if you do plan to attend because I would love for you to sit with us.

Please read the flyer below and book your tickets online for Saturday 23rd March at Flagstaff Gardens in Melbourne.

And as always, please feel free to share this entry.


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