Tom's 5th Birthday

Everybody remembers the birth of their children.   My little boy, Tom, was born 5 years ago tomorrow. That day was beautiful. I remember it like it was yesterday. The skin, the cuddles, the celebration that I had survived the birth !!! Tomorrow he wants the WHOLE Kinder class to come to his party. We have approved this request. With everything that has happened, we cannot deny him the chance to feel important. So tomorrow will be difficult for Scott and I, but hopefully Tom has the best birthday party ever. Tomorrow at 2pm we ALL fall in a heap. xxx (apologies my "enter button" is not working on my computer!)

Jemimah's beautiful Speech : Saturday 11th June

The other day I posted my speech on Saturday night.
Here is Jemimah's xxx.


Hello and welcome to Amelia's Night.
 
Many of the people here have been part of our fundraising efforts so far - sausage sizzles,
cup cake stall, Maccas night, raffles, meetings and on fb, but for those of you that
haven't yet had a chance to be a part of the Amelia's Project journey, here is a
brief rundown of how we began:

Amelia's Project began after Amelia's stay at the Royal Childrens Hospital in
December last year. Whilst she was in hospital Amanda was regularly updating her friends on
facebook about how she was going, and the new diagnosis of A-T. Her facebook posts were
detailed, heart breaking and emotional, and her facebook friends were glued to their
computer screens waiting for her next post, each more devastating than the last. Many of us
are Mums and could only imagine what she was going through. Those posts made it feel very
personal for each and every one of us, and we felt like we were sharing in her shock and
grief.

However, from this experience something pretty amazing grew. When Amanda, Scott, Amelia and
Tom returned home a few of us cooked meals and dropped them around, with the thinking that
this is at least one thing they wouldn't have to worry about. Many others in the
community showed their support for the Nicholds family by leaving notes, gifts, calling and
dropping in. Something was growing, but we didn't know what.

A friend of Amanda's began a gift registry where people could donate gifts for Amelia,
helping to make her life as amazing as possible. We began discussing Amanda and Scott's
dream of taking Amelia to Disneyland, something that they had hoped to do in the future, but
which the A-T diagnosis had made a more immediate goal. We began Amelia's Project as a
way of making this become a reality.

A few of us got together one night at Amanda's and formed a committee so that we could
become a not-for-profit organisation. We held our first Amelia's Project meeting and
were blown away with how many people attended. Through Amelia's Project the
Nichold's family rediscovered many friends and family that they hadn't seen in
years, people who had heard about their difficult journey and who wanted to help. The
enthusiasm in the room on the night of our first meeting was electric - it was a community
coming together to support a special little girl and her family. It was Mums supporting a
fellow Mum. It was pure determination to make Amelia's life amazing.

We discovered BrAshA-T, an organisation raising funds to find a cure for children with A-T.
We resolved that the aims of Amelia's Project would be to get Amelia to Disneyland this
year, that we would support Amanda and Scott in being able to provide for Amelia's needs
in the future, and that we would support BrAshA-T because finding a cure is the ultimate
goal!

Amelia's Project continues to grow. We have a facebook page, Twitter account, and Amanda
is even keeping a blog. Our cause, and Amelia's story, has had much media coverage in
the last six months. Many fundraisers have been held and we have raised just over $10,000 to
date. We aim to raise $20,000 this year to get Amelia and her family to Disneyland in
October. We continue to have monthly meetings, and as Amelia's Project has become so big
(over 625 members on facebook now!) we are formalising the running of our group. What began
as a group of Mums helping a Mum in need has grown and grown. We are very proud of what we
have achieved, and we can't wait until Amanda is posting photos of Amelia at Disneyland
on facebook!

This is a brief rundown of what has been a very busy 6 months, where complete strangers have
come together for a common cause. People from different states and even different countries
are part of Amelia's Project now. We thank you for joining us tonight for our first
major fundraiser and for becoming a part of a group of people who are making a difference in
the life of a special little girl, who has been dealt a cruel blow but who is also lucky
that so many people, from friends to teachers to relatives to complete strangers, are all
rallying together to ensure that her life is truly amazing!    

The Amelia Night : June 11th 2011

Where can I possibly begin describing our night on Saturday night ??!!
You cannot possibly fault it.
Everything went perfectly.
There was a handful of people who did not stop the whole night. They did not eat, they did not drink, they did not socialise.
Me ? Well once i finished my speech, I did not stop drinking !!
That is definately a lesson learnt.
But the people who had full control of the night were unbelieveable.
Volunteers ....... helping us.
For six months they have been so passionate about raising money.
They have created a "formal" organisation that is legally allowed.
I just sit there and do what i am told !!!
(when you are put on a national television show it is when you realise how powerful this group is becoming!).

But on Saturday night when we were able to raise $52,583, that is absolutely mind blowing.
RSL House donated many thousands specifically for house renovations (because of Scott's grandfathers association with the war).
Businessmen began making very large pledges.
Never, ever would we have predicted that we would raise that kind of money.

But you know the thing I really like the most ??
How many people said they have never laughed so much.
Once we got past "the sad speeches", everyone relaxed (I think I lead the way!!).
Our Auctioneer, Darren, set the mood for the night and made everything fun.
I am just so happy that people are saying "it is the best night I have had in a long time".

There was also about 200 donations.
Family, friends, friends of friends.
Everyone knows someone that owns or works for a business.
Everyone works.
The donations were varied and awesome !!

I posted my speech yesterday.
Jemimah's will come tomorrow along with some photo's.

Now it is time for me to move onto my next project.
This one will be mine (and the people at Brashat!).
I am not expecting anyone else from Amelia's Project to do any work.
You are all burnt out and need to focus on your own lives now.

On August 13th Brashat will be having a Melbourne Gala Night in North Carlton.
If you would like tickets or a whole table please let me know.
It would be nice if we could all be in the same area of the room.
Payment of tickets is done through the Brashat website.
I will create a list of people that let me know they are coming so that I can make sure we are together.
At the moment I know of 5 tables being organised.
Absolutely awesome !!!!

On Thursday night, Amelia's Project Committee is having a meeting.
None of us ever knew that we would grow this big or achieve so much.
I will be giving our current Committee the chance to stand down.
There is absolutely no way that I would be offended.
It is so BIG now and people are already asking for The Amelia Night to become an annual event.

I would like to know if there is anyone out there in "Amelia's Project Land" that would like to join our Committee.
Anyone is welcome.
But it is work.
Most of all, I see great friendships being made and the celebration of success from a night like last Saturday.
The girls are so very proud of themselves and so they should be !!!

Please contact me about the Committee or Brashat tickets in August.

xxx

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 13^th 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 !!!!!