Amelia's Project Night PART 1

WOW.

Amelia's angels organised another amazing night last night.
They also all worked to create a smooth running and fun night for all.

We do not know the money amount yet but will be able to announce it by Thursday.

As many of you know though, Scott and I appreciate the support and love in the room MORE than any amount raised.

It is going to take me a little while to recover from the last week so I am going to go to bed early tonight.
I thought I would cut and paste my speech on here for those that may be interested.
I will speech more about the night during the week.

Goodnight.
xxx

MY SPEECH
Saturday 4th August 2012

It is with much love in my heart that I welcome every single person in this room tonight.

My name is Amanda and I am truly honoured to be Amelia and Tom’s mother ….. and Scott’s wife.

You have all chosen to attend a night for OUR daughter.

You have paid $60 to come and assist her not only have an amazing life but also to assist us in purchasing the necessary equipment to make her life easier.

You will also experience a night to remember because the same way this night has been planned is the same way Amelia’s Project began.

It began with friendship, love and kindness.

But the true meaning of an amazing life is happiness and fun.

While we endeavour to ensure Amelia’s daily life is full of happiness we also realise that it should be the same for every individual.

Please relax and enjoy yourself tonight and drink WAAAAY too much.

Last year, many of you came here to help us take her to Disneyland.

You have just witnessed some pictures of us at the “most magical and wonderful place on earth”.

I can assure you all that it did live up to its reputation.

Some people were worried that we may encounter disappointment.

I can assure you, that it was never the case.

(even when Tom vomited all over Scott and I on the plane)

Because of everyone in this room last year we were able to experience the most amazing holiday as a family.

To create memories that WILL last a lifetime.

The smile and happiness projected from not only Amelia, but all of us, will stay in my memories forever.

After our beautiful night last year, I was approached by someone who attended.

I had attended High School with her and had not kept in contact since.

She messaged me on Facebook and said…….“My husband walked away from your night and immediately began planning to remodel  your 2 bathrooms. He is a builder.  He now has a team that would like to donate their labour to creating 2 bathrooms suitable for a hoist and a wheelchair”.

So while we were in America they developed the most amazing bathrooms…….

The rest of our house looks incredibly dated now !!

To Jenny Taylor and Mark O’Dea, we will always be grateful for what you did for us.

The words “Thank you” will never be enough.

Amelia’s Project began out of a group of friends, both past and present AND I can honestly say now……future friends.
It was a group created from friendship ….. kindness …… and support.

It was a group of strangers ….. but all known to me ….. that wanted to join a group to assist not only the money pouring in but also the little girl in the middle of it all.

Amelia’s Project is about Amelia.

Full stop.

Amelia WILL have an amazing life , while also getting all the necessary equipment she may need……..

But in the end there will be no regrets.

Amelia’s Project is about a life with NO REGRETS.

If ….  and when we say goodbye, I want to be proud of what we were able to offer her…….. as a united group, not as just a family.

Every single person in this room ……… should….. and would be proud of their contribution.

Amelia’s Project Committee and it’s helpers can never receive enough thank you from our family.

In the next speech of this evening you will hear about each individual BUT I know the person talking will not thank herself.

Belinda Plunket has planned this whole night with Michelle Clark. Belinda is our rock, event planner, time keeper and overall organiser.

Her love for Amelia is evident and my love for her is indescribable.

I do not know what to say except thank you from the bottom of our hearts.

You are one in a million and I am so lucky to have you as a close friend.

May I also take this chance to thank my dad, my mum, Scott’s dad, Scott’s sister Jane and my brother Stuart.

Your support has been beyond describable and we thank you for standing with us all through this.

And finally I would like to address …… YOU.

Your own person sitting there in your chair.

Live in the moment.

Appreciate every minute of every day.

Scott and I stopped looking into the future 19 months ago and now accept we will be elderly before we pay off our mortgage.

Do we give a shit?

NO.

We have Amelia NOW and we are going to enjoy every single second of that time.

Much debate happened recently over a DVD that my cousin and I were creating.

It showed Amelia at 3 and 4 years of age compared to now.

It was not only incredibly upsetting to collate but also to watch the final copy.

I…… personally,  chose not to show it tonight.

Not only was it humiliating to Amelia, but it would also be incredibly upsetting to many in this room tonight.

Amelia used to run ahead of me into school, jump on the bed and sing and dance all day.

She was a “normal” child .

ow she needs someone to WALK with her constantly, someone to help get food into her mouth and needs assistance toileting and showering.

The patience needed to communicate with Amelia is time consuming and also very upsetting when you cannot understand what she is saying.

I was filming all of this to show you.

Filming a 9 year old child struggling to do every day tasks.

She did not like it and neither did I.

In 2 years the decline has been massive.

And it only gets worse from now on.

Ataxia Telangiectasia or A-T is a very nasty disease.
You cannot CATCH it.
It is genetic from your parents.’

It begins showing itself at 2 years of age.

It is degenerative …… it gets worse.

As your brain cells die , as they do in  every human, they are not replaced as they are for us.

Slowly all motor skills are taken away…, as is reading,….. writing, and speech.

Children with A-T die from either cancer (where there is a 1000x higher risk of getting than any other human), respiratory infection or choking.

24 hours a day we live with this BUT I have chosen not to show you any of this tonight.

Tonight is about going out and contributing to everyone in this rooms AMAZING LIFE.

Please watch this very special message and remember it when you are struggling to get through a day………..

(((((When that special message is uploaded to You Tube I will put the link on here)))))

xxx