Thursday, 9 June 2011

The Circle Television Show

I have just finished watching myself on The Circle this morning.
It has been a very big day and I am now sitting back in shock that I actually achieved what I set out to do.

When Jemimah encouraged everyone to "dob" me in, I never believed that they would actually call.
When they did, panic set in and lasted till last night.
As I was laying in bed wide awake I suddenly realised that this would be my one and only chance to create awareness about A-T , Brashat and Amelia's Project to a very wide audience.
All my nervous energy disappeared and determination and a will to succeed took over.
Here is the chance to let people know about this horrible disease and what it is doing to 35 families in Australia (not to mention hundreds around the world).
No regrets is my motto for Amelia's life and I decided it was my motto for today as well.

Brashat needs money to save Amelia's life and I was going to do all I could to help them get it.....on television.

To tell you the truth, the makeover meant nothing to me.
My destiny is to.......
a] Give Amelia the most amazing life I can.
b] To work as hard as I can to help the people trying to save her life.

But the makeover was fun!
I was treated like a celebrity in hair and makeup and dressed in clothes that I definately would never have worn before.
I have come home with 3 stunning dresses, shoes, a jacket and jewellery.
Everyone, the hosts, crew and staff backstage were beautiful.
Kate and Brooke (backstage)were extremely kind and easygoing.

More people are wanting to attend the Brashat Melbourne Gala on August 13th with me and I am hoping that they will recieve much needed donations to help our kids.

Thank you to Jemimah and Shell for accompanying me today. The nerves you were both displaying was very entertaining !

Thank you to all the beautiful people out there watching the show (our recording it for later).

A very memorable moment will be turning my iphone on once we let the studio's. It could not stop "honking" with every text message I had received. There was also 171 emails. All in the previous 2 hours.

Be proud Amelia's Project Angel's.
YOU have made all of this happen.


Wednesday, 8 June 2011

The Conference in Brisbane

HOPE is an excellent thing to have if you try to believe there has to be some out there in our big wide world.
But when you spend a day listening to doctor's and scientists explain the "evidence" of hope then you enter a whole new world.

Yesterday we listened to many people, employed by Brashat, speak about what they have discovered and what they are getting closer to.........treatment for A-T and eventually a cure.

We began the day listening to Krissy Roebig speak about "her story".
I admit, I cried.
We heard the background of Brashat and the A-T clinic.
She has two children with A-T and four years ago decided she could not just sit back and wait for everyone else. She needed to be proactive and establish a base for A-T here, in Australia.
Krissy has not only set up an organisation, she has employed world renowned scientists, who have approached many other medical groups asking them to assist in finding answers. Brashat has established a database for all A-T children and has three clinics per year with highly qualified specialists.
Next week is the Brisbane Gala Dinner.
700 tickets sold in 48 hours.

Our day was spent listening to what A-T does to children.
We listened to what Amelia's future will be.
But we also listened to what WE can do to help our daughter.

Apparently there is research to prove that nutrition can really help.
In the future there may be a clinical trial involving "nutrition shakes" which may assist in slowing the progression of A-T.

Then there was a speaker I cannot remember.
I fell asleep.
I think he thought we were trying to gain our medical degree's in molecules, genetics, cells and god knows what else.
The point here is, he knew what he was talking about and was very enthusiastic.
So another person researching......something !!!

Next was a lady speaking about the immune system and A-T.
If an A-T child gets a cough, their lungs will be permanently scarred. They cannot heal.
This speaker gave us advice on making sure we avoid all sick people and how to look after our family's health.

Next was the speaker we flew to Brisbane to hear. Well at least the content of her talk was exciting and gave us the most hope of any of the other talks.
Dr Kate Sinclair (neurologist in Queensland Health) gave me so much insight into the research in language I understood at the March clinic and she did it again yesterday.

Kate spoke of the world-wide clinical trials website and the A-T registry set up in Italy.
She spoke of the possibilty of a bone marrow transplant being a lifeline to A-T patients in the future.
Kate mentioned Amantadine medication being used to help stiffness, lack of facial expression, slow movements, ataxia and involuntary movements.
Betamethasone medication possibly improving the neurological effects of A-T and Baclofen medication reducing spasticity and tremors.
(One of these medications will be used in a trial on all of our kids in the next 12 months-just cannot remember which one !!!).
Brain Imaging would be used frequently with any possible treatment to track a possible reduction in the loss of brain cells.
And finally she mention Deep Brain Stimulation (DBS). I will speak of this more later.
The excitement of Scott, Myff (yes Amelia's beautiful physio flew all the way up to listen) and I were overjoyed with her talk.
She was excited. Talking so that we understood and mentioned frquently the HUGE steps being made.
(After a talk later she said we may see real results in 5 years!!).

I was once again falling asleep when the stem cell man spoke BUT I did write down "stem cell research will lead to transplanting healthy cells - created from Amelia's skin - into her body OR using the research to create drugs to treat A-T. They can reprogram her cells and make them healthy !!!!

Finally I really enjoyed Greg's talk. He was also at the clinic in March, is a big kid, looks like he has ADHD and is very clever.
Two weeks ago he began in a new job. He will be working with people that are genius's in neurophysiology of neural activity. They are establishing a world class centre here in Australia that will focus on Deep Brain Stimulation. They already have patients, with dystonia and parkinsons, that have improved immensly. Greg showed us footage of children in wheelchairs having this "pacemaker type device" inserted into their brain that constantly reprograms the brain to function normally.
After talking to him later, A-T kids will definately be involved in testing in the future.
He believes we have been looking at sultana's instead of grapes in the search for treatment or a cure.

But of course it all comes back to funding.
Like everything else.
The research cannot be done faster without money to pay for more manpower.
Every speaker thanked Brashat for helping fund their discoveries.
Brashat needs my help.
If I want Amelia to be saved, at whatever stage she is at, they need to find treatment and/or a cure quickly.
I am not going to lose her because there is not enough money to take the steps these doctor's know can be taken.

Scott has come home a different person.
I made him come to Brisbane.
He has come home with real hope. Real evidence that it may happen.

On August 13th 2011 a magnificent gala night is happening in Melbourne for Brashat.
There will be speakers telling you of the hope I have been so lucky to hear about on two occasions.
I will be working hard now to get donations and sell tickets because..........
they may REALLY just save Amelia's life.


Sunday, 5 June 2011


I have a confession to make.

Nine years ago I started to taking anti-depressants.
I suffered, and still do, from anxiety about anything and everything.
But it is mainly about what people think of me.
Silly I know, but such is life.

I look at it like diabetes.
Diabetics need insulin, some people need serotonin, the feel good hormone.

Generally humans develop it naturally, some of us need some help.
I take a pill daily that helps me release that from my brain.

I am not ashamed of it.
It is who I am.

Last night, at Amelia's 8th Birthday Party, the anxiety was all consuming.
The CD for my games did not work, the kids were running around obsessed and the pinuata would not open. There was not enough food, more children showed up than invited / replied and I could see it was all too overwhelming for Amelia.

A lot of soul searching and beating myself up today.

When you have made a plan for the running of the party and nothing goes to have a panic attack.
I took it out on my husband, my friends and the gorgeous people helping.
Many people have told me today that I hid my panic and stress well.
Those extra close to me know different.
One of my bestest friends said "I have never seen you that stressed".
I have not felt that stressed in a very long time.

When I was younger I changed schools because of my anxiety.
Thankfully I have it under control in the last 5 years.
Not last night.

The expectation for Amelia's party was HUGE.
Amelia's A-T diagnosis was 6 months ago and I wanted to give her the biggest party I could.
But today I realised that the party was too big for Amelia and me.
Because of her A-T ,I planned too much.
I am grateful for the help, presents, and love in the room.
But, this week especially, you have to remember your own capacity to handle situations.

I have many friends on anti-depressants.
Because I am so open about it, they feel comfortable telling me maybe.
But when our lives are getting so much busier, expectations on people in looks, income and assets are so much higher, it is hard to be comfortable with yourself.
I am proud of the fact that I have been doing so well in the last few years.
Last night was a step backwards and a disappointment inside my head.

I love my family.
I love the friends I have and have made through Amelia's Project.
I love my new friends who are also going through the daily suffering of A-T.

Amelia and I have had a glorious "chocolate" week but unfortunately, due to my embarrassment from last night, I feel my blog tonight is justified.

Scott and I leave tomorrow for Brisbane to learn as much as we can about Ataxia Telangiectasia.
We are leaving our children with about 8 different people over the next 6 days.
I so greatly appreciate everyone's help but also have "mothers guilt" that both of us are leaving them.
We have talked up the "adventure" but still............

So now that my therapy is complete for this evening I say farewell till Wednesday night.

The Circle on Channel 10 is Thursday morning.

And my positive thinking for today ?????...............Nothing could be as stressful as yesterday, so the rest of this week will be easy !!!