Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Monday, September 27, 2010

More just because...

We have been quite clicker happy with the camera lately... but love some of the shots we have got recently. Here are some more. Enjoy!!!

This picture shows how 'wild' Ellies hair is
Oooohhh puppy dog!!
'Not so sure about these kisses Mum'
Ok, I like him now
Our beautiful smiley girl


Saturday, September 25, 2010

Wednesday, September 22, 2010

4P AUSSIE KIDZ UPDATE

Remember I posted a few weeks ago (here) about my dream of starting a charity to financialy assist WHS kiddies and their families. Well this week we received approval from Consumer Affairs Victoria for 4P AUSSIE KIDZ INC to operate as a Incorporated Association, click here to read more about what that means.

The next step is to apply for an ABN and to be a Deductible Gift Recipient (DGR) which means we are a entity or fund that can receive tax deductible gifts

We also have a graphic designer working on a logo that will be associated with 4P AUSSIE KIDZ INC, that will be on our website and all associated paperwork. Hopefully I have have this soon to show you all.

Slow and steady wins the race!!! Go 4P AUSSIE KIDZ INC

Wednesday, September 15, 2010

Very excited about our first WHS conference...!!!

Every 2 years the Australian Wolf Hirschhorn support group hold a conference, for parents, kiddies and family members with WHS. The conference last year was held only 3 months after we had received Ellies diagnosis of WHS. Last year part of me wanted to go, but there was a massive part of me that was scared to go. I think because Ellies diagnosis was still fresh, we still were taking it all in, and learning about Ellies condition. I think if we went last year, it would have been too much, I think it was better that we dealt with the diagnosis within ourselves first before we started meeting other families.

The dates for the next conference have been announced and it will be held in Ballarat from the 11-14 November 2011. Luke and I are very much looking forward to this. We have already met 2 families of kiddies with WHS, and we are looking forward to meeting so many more.

Anna and David who have Ryley also with WHS, are orgnaising/hosting next years conference in Ballarat and have organised Dr John Carey (USA) who is one of the world experts in WHS, and he has spent the last 4o years researching the condition. He recently spoke at the National USA WHS conference and 2 years ago at the UK conference.

Very Very excited about the conference!!

Wednesday, September 8, 2010

Ellies new standing frame - The Leckey totstander

This is Ellies new standing frame. It got delivered yesterday. It is a newer model, than the one that we had borrowed, so it is slightly different, in the way that it supports Ellie. Ellies physio is coming early next week, so with her help, we will have it set up properly for Ellie...

Then ill post some photos of Ellie standing up in it...

(A BIG thank you to Charity2Charity for assisting with the purchase of Ellies standing frame)


Saturday, September 4, 2010

My dream is on the way to becoming a 'REALITY'

I have posted many times about my dream of wanting to start a not for profit group to raise funds to support WHS kiddies and their familys, and also to raise money to go towards research into WHS.

I have been working with a family member, (thanks Johno) to acheive this. Let me say it has not been easy. We have been totally confused by the whole process of how to set a charity up. However..... Thursday this week, there was light at the end of the tunnel.

We were put in contact with a man, who over the last 20 years has set up 50 or so charities. He has offered to help us every step of the way, till we have it set up.

What you need to know though, this is not his job. Nor does he get paid for this work, to help set up charities. He does this purely because, in his words; "He likes to help people"

WOW!! We were blown away by this man. By his generosity. By his wealth of knowledge. By his willingness to help us, Every step of the way.

So... with saying that.... where are we up to in the process?

We have completed our Application to become a Incorporated Association & we have our statement of purpose, and rules (constitution) that will allow us to apply for Deductible gift recipient status. The next step is to post it in and wait for our hopefully approval and our Certificate of Incorporation. FINGERS CROSSED!!!

The name of the group will be 4P Aussie Kidz, As Wolf Hirschhorn Syndrome is caused by a deletion of the short arm of chormosome 4 (4P)

I will keep you all updated!