Lost for words...

Actually I am not lost for words... However the words I want to use would probably be deemed inappropriate in a public forum like Blogger.

OK, here it is. Today when I logged onto Facebook, there were quite a few posts going around about a family in America who have a beautiful little girl called Mia. Mia has Wolf Hirschhorn, like our Ellie.

Mia's family have been advised that she will require a life saving kidney transplant in the next 6-12 months. However her parents have been advised by Mia's Doctor of 3 years at CHOP (Children's Hospital of Philadelphia) that she cannot have the life saving transplant that she requires because she is 'Mentally Retarded'

The family even said that they didn't want Mia's name to go on the wait list, they were happy to be tested themselves and have their family members tested to see if anyone matched what Mia required.

They were told. "No, she is not eligible because of her quality of life, because of her mental delays"

What the hell...!!!

I could not imagine being told that because Ellie had a disability, because she is cognitively impaired, that because she has an intellectual disability (That's the PC way of saying it by the way CHOP) that she could not have a transplant that will SAVE HER LIFE....

These Dr's are playing God with this child and family.

Alcoholics get new livers, and I'm sure there are quite a few that still drink
Smokers get new lungs, but I'm sure that doesn't stop them all from smoking

But this beautiful little girl, who didn't choose her life..... who didn't choose to be born with Wolf Hirschhorn Syndrome cannot get a life saving transplant, because she is labelled 'Mentally Retarded' and some Doctor at CHOP says so.

Now I am no legal or medical expert by any means, however this does not sound right...

It is not ethical
It is not moral
And most of all it is not HUMANE

CHOP... I am all the way down in Australia, can you beleive this story has reached us here... I hope the public outcry that is happening right around the world, makes you 'shiver in your boots' and rethink your decision.

Mia has the right to live...
Her family have the right to continue to enjoy her in their life...

A online petition has been started up, to get CHOP to allow Amelia the chance at having this life saving transplant. Please take the time to sign:

www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive

To read Mia's story told by her parents, please visit here:

www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Our little poser... she melts my heart

A while ago, a lovely lady called Melissa from Memories Of Mine Photography contacted me. She had come across Ellie's blog, and also 4P Aussie Kidz. She wanted to do something 'nice' for us, she wanted to photograph Ellie for us. Up until now I have never had any professional shots done of Ellie, as I always had an excuse...

I wanted to wait until she had her cleft lip repaired.. Tick

I wanted to wait until she had an artificial eye... Tick

I wanted to wait until she was on a better seizure med, so she didn't look zoned out... Tick

I wanted to wait until she was sitting... Tick

You get my picture, I was always putting it off... for reasons that I thought would prevent us getting the perfect picture...

When this opportunity arose, I had no other reasons. I had no other excuses. Why not? I thought.

When we arrived at the location, we were worried weather Ellie would sit still long enough, as she is constantly bum shuffling, making it hard to get a photo, let alone many photos...

Ellie was brilliant. She sat still, she smiled for the camera.... she was actually posing for some shots. The end result..... BLEW US AWAY.

Ellie's eyes shone.. Her skin was so pale & perfect... Her smile melted my heart... This was our girl, and she was captured perfectly... Thank you Melissa

Here are just some of the shots.... Enjoy