Friday, September 5, 2008

Blog for a cause.

I visited one of my favorite blogs today, and this is what I found.

It moved me so much that I needed to put it on my blog. In hopes that more people will read it and sign the petition. Of course he has more readers(being the clever monkey that he is) but it cant hurt to try.

The original post was written by Veronica.

Please, if you can, take a moment of your time and Read Ivy's story. Sign the petition. I know most of us are trying to have a baby, some of you are looking to have the first, some are going for #2 or 3. But imagine a baby, who cant lead a normal life. Forget for a second that we cant have one of our own right now, and just think of an innocent child who isn't being given even a CHANCE at living life as a two year old should be. Its heart breaking.

Ivy is beautiful and Ivy is sick. Ivy is only 2.

And yet, at age 2, Ivy has seen the inside of a hospital more times than anyone should have to. Ivy has a rare immune deficiency IgG. Because of that, she has Pemphigus which is an autoimmune response to the IgG [please note, these are photos of Ivy's pemphigus blisters and they may be a little graphic for some people].

These are horrible conditions that no adult should have to deal with, let alone a child.

Ivy is currently on Prednisone and Mycophenolate to help control her symptoms and blistering; however, these drugs suppress her immune system, on top of the deficiency.

Ivy’s mum says “…she was never good at mounting a response to infection but the meds make it worse.”

She frequently ends up in hospital on IV antibiotics, just to help control the infection in her ears that never seems to completely disappear. She cannot be exposed to a simple virus in fear that it will land her back in hospital for days at a time.

She can’t go to the playground to play.

She can’t attend playgroup.

She can’t head to the supermarket with her mother.

She might never be able to go to regular school.

She is only 2.

However, there is a treatment that would give Ivy a good chance at normal life.

It’s called IVIG (intravenous immunoglobulin) and it is a transfusion of immune cells that would bolster Ivy’s own immune system and help her fight infections in a normal way.

Think about it, a chance at a normal life. A life that doesn’t involve frequent hospitalisations.

Unfortunately, the officials at the Australian National Blood Authority have denied the request for Ivy to have this treatment. This treatment that could very well keep her out of hospital. So far, all appeals have been in vain.

As Ivy’s Mum says on her website:

“My little girl is going to have a life of hospital admissions and illness, some chronic, some life threatening, because some guy in an ivory tower decided she could survive without this medication.”

How is this fair?

What if it was your child? What if it was your sister’s child? Do the rules change for daughters of the officials? How come someone with a big stamp gets to say yes or no to this little girl’s chance at a normal life?

It shouldn't be like this.

All I am asking for is 2 minutes of your time. If you could just head over here and sign our petition, we might be able to get enough support to convince the National Blood Authority officials to change their mind.

Ivy is only 2. She deserves a chance to be normal.

Please, a minute of your time could make all the difference for Ivy.

Sign Petition

If you have a blog and you would like to help spread the word, please feel free to copy this post and link back here to me at Sleepless Nights [so that I can follow where it has gone].

And if you would like to follow Ivy’s story (and that of her twin brother and older siblings) you can find them here, at My Three Ring Circus, written by the talented Tiff. All photos were taken by Tiff as well.

* * * * *
Veronica is a remarkable young (expectant) mother from Tasmania, mature beyond all our years. Tiff is a dedicated mother, and a genuinely talented portrait photographer.


Xbox4NappyRash said...

Thank you very much Sarah for reposting this. Very kind of you.

Just for clarification, the original post was by Veronica, at SleeplessNights.

Elfie33 said...

I've signed it. Hope it helps. Have a good weekend.

tiff said...

Thank you so much for this, the kindness of strangers has moved me so much!

Veronica said...

Thankyou so much. So much.