Monday, 13 June 2011

My Speech: Saturday 11th June 2011.

My name is Amanda Nicholds.
I am the very proud wife of Scott and mother of Tom and Amelia.
In December 2010, Amelia was diagnosed with Ataxia Telangiectasia, after believing for 4 years that she had cerebral palsy.
A-T is a fatal genetic disease. It kills brain cells in the cerebellum. The cerebellum is at the base of the brain and controls, movement, balance, co-ordination, muscles and speech. It also attacks the immune system.
Life for Amelia is a struggle. Everyday tasks can only be described as slow and difficult.
She has always been a happy, confident and social little girl. Life through her eyes has always been fun and positive.
In the past 12 months we have seen a big change in her personality. But we have tried to slow down with her so that there is no pressure to keep up with everyone. For those who know our son Tom, that is sometimes very difficult.
But Scott and I have been handed a gift.
A beautiful, kind and caring child.
It is now our responsibility to repay her for all the joy, love and happiness she has brought to our lives.
I firmly believe that it is my destiny to not only make sure Amelia’s life is happy and positive but also to fill it with amazing memories of a life well lived.

As parents we have to be careful how we react when she stumbles into you, knocks a glass off the table or falls over and cannot get back up.
Every day you try to stay positive while watching your own child fade away in front of you.
But every time you cuddle her or see her beautiful smile, it reminds you of how lucky we are to get her.

When Amelia was born she had colic for 4 months.
 I chose to hold her every day when she was screaming in pain.
I stood in her room every night swaying with her in my arms trying to soothe her.
Eventually, after a few hours she would stop screaming and fall asleep in my arms.
If people told me to just leave her and walk away I had a very simple answer.
“I want her to know that I am here. I want her to know that I will always look after her and will never leave her to fight this pain on her own.”
That response will never change.
We will not let her fight this alone.

An amazing organization in Brisbane called Brashat was established 4 years ago by a family with 2 children with A-T. Every single person involved is trying to find treatment or a cure for A-T through scientific research and will soon begin clinical trials. They are also employing other scientific laboratories to find even more answers. They have given us a feeling of hope. The possibility of delaying the neurological decline of A-T may be only 5 years away.
Now this is where as a parent you really struggle.
Will they be able to help us in the near future or will it be too late.
I will not let a lack of funding be the reason I lose our daughter. If the doctors, neurologist and scientists are excited, enthusiastic and hopeful then we will be too.
Please consider coming to the Brashat Gala night in Melbourne on Saturday 13th August.
Please write your name down on the list over there and help us try to make the answers Brashat need come sooner rather than later.
Please consider donating anything to be auctioned, just as you have so kindly done tonight.
You will be helping not only Amelia but 34 other children in Australia as well.

Please let me thank you all for coming tonight.
Thank you to Amelia’s project and it’s many members.
Amelia’s Project Committee has been there from the start of the year and are always a phone call away.
Thank you to our families for their unwavering support.
Thankyou to Amelia's school who probably see Amelia more than I do.
Taking Amelia back to school after returning from hospital last year was one of the hardest days of my life. But I have learnt to understand that everyone there loves and cares for her as much as we do.
And to the people I speak to on a daily basis, Jemimah, Michelle and Belinda. Your constant work on Amelia’s Project is mind blowing. I hope after tonight you get to go home and rest.
And I really need to thank Peter Bromley and Jason and Rebecca Valk for making this night possible.
And all the people who have so kindly donated.

And finally to my Scott.
We have been together for 21 years and even though we may not be a good genetic match for having children………you were….. are…….and always will be my soul mate.
We will stand side by side and get through this together.

Tonight is not about joining “the pity train”.
It is about helping to create an amazing life.
I want each and every one of you to walk away and remember tonight.
This is your life too.
Make it amazing.
Because I can guarantee you, Amelia’s will be.
And first stop is DISNEYLAND !!!!!

1 comment:

  1. Beautiful, inspirational words Amanda. Not only are you an incredible women, dedicated Mum and Wife but you are an awesome advocate for BrAshAT.