Friday, 5 September 2008

If I may...

"Jack of all trades and master of none"

That's me.

I know a little about a lot, and a lot about very little.

One of those things I know a lot about is walking away from a doctor's office and feeling ripped off.

When the decision to provide medical care is made by people who have never even seen you, it's horrible, frustrating, and saddening

It's bad enough when you are personally affected, but can you imagine what it would be like if you were being denied treatment for your child?

This is what is happening to a friend of mine, Tiff, and her husband David. These guys are parents and foster parents. They spend their lives looking after all their children, and still find time to look out for others.

Their daughter Ivy, is just 2 years old. Unfortunately Ivy is ill, to the point where her quality of life is not as it could be.

Her parents and her paediatrician have been trying to get her treatment.
A treatment that would enable her to live a better quality life, a more normal life, a life that every chubby cheeked little girl should be allowed to have.

She is being denied that treatment, and therefore that chance, by people who have never set eyes upon her.

Luckily, Tiff & David have friends who want to try and help. So from here on in, I leave you in the capable care of the words of one of them, Veronica from Sleepless Nights, who tells the story best.

The rest, is up to you....
* * * * *

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.



38 comments:

Christa said...

How heartbreaking. Ivy is so adorable, those curls. She deserves all the happiness in the world.

I will send good vibes out into the universe for Ivy and her family.

Anonymous said...

Like stab in the heart...I am lost for words.
Deno

iVegasFamily said...

I find it appalling that beauracrats have so much control over the health and well-being of a child whose quality of life can be greatly enhanced by something so simple as IVIG. It's not a major operation that will cost millions of dollars. Is there an appeal process or is this National Blood Authority the ultimate and supreme decider when it comes to choosing whose life is worth helping?

TentCamper said...

That is so sad. Every child deserves a fighting chance. She is soooo cute too.

But I do have to say that you stole my motto...well almost.

Mine is, "I know a little about a lot."

Jessica Gottlieb said...

Facebook
Digg
Stumbled...

Kinda just screamed really loud and hoped someone heard.

Ed (zoesdad) said...

As I stated on the petition--no child should have to suffer because of the callus disregard of bureaucracy.

I hope this helps.

Miss said...

Heartbreaking. Signing this is no problem at all!

Tara R. said...

I can't imagine how a request like this could be denied, what possible reason could there be. I signed the petition, and I hope Ivy will get the treatment she needs.

maggies mind said...

Signed and linked. I hope we all can help. I really do.

Maggie, Dammit said...

You're a good man, Charlie Brown.

Kori said...

I thought bullshit like this only happened in America; what a fucking nightmare. You bet your ass I will sign, and link over the weekend if I can. She is too adorable!

James Austin said...

Terrible that beurocrats have make those types of decisions. How can they sleep at night knowing that they are denying proper care to beautiful children like Ivy. I guess that is the drawback of Govt sponsored healthcare.

Sarah said...

Awful. Just awful. EVERY child should be given a chance to lead a normal life.
I signed the petition, and re-posted this in my blog.
I hope it helps.

Sarah said...

Yes, yes...I thought I had thrown that in there.....I have added a link at the top.

And no need to thank me X, it was nothing. Just a simple blog. But maybe with enough simple blogs and signatures, something good will come of it.

Heres to hoping

that girl said...

Dammit Nappy! Who gave you permission to break my heart on a Friday afternoon!? Huh? That lil bit makes my ovaries lurch and growl that they want a girl!

Okay, so, I dont' really understand.. Here, treatment, or lack thereof is a matter of money - is that the case? (If so is there a donation site for her?) Or is the treatment risky or something?

Also, if we sign the petition from anywhere besides Australia will it do any good?

We'll be praying for her.

Ashley said...

Omg, she's beautiful!

Anyhow, consider it signed.

Xbox4NappyRash said...

@Everyone - Thanks for signing if you did.

Even outside Australia, what harm can a signature do?
Extra name is a point made.

For those who have reposted, linked elsewhere, and done all those fancy stumble things I don't understand, thank you.

And yes, she is gorgeous.

tiff (very teary now) said...

OMG, Thank you, thank you, a thousand times thank you.

AnnD said...

Beautiful, beautiful little girl. I signed it already on Sarcastic Mom's blog. People amaze me...to turn away medical treatment to a child, any child, is inhumane. How do people sleep at night?

TW said...

Consider it done. Will spread the word

(What a gorgeous wee poppet Ivy is too)

Veronica said...

You? Are worth your weight in gold. GOLD I tell you!

Veronica said...

You? Are worth your weight in gold. GOLD I tell you!

abritdifferent said...

I saw this earlier today via another blog linking to sleepless nights. You're a gem to post this too. I already signed.

Xbox4NappyRash said...

@Everyone -

Hey Tiff!

Again, thanks for the signatures, and reposts!

that's a LOT of gold veronica...

abrittdifferent - I love how you described the family as 'wee'..

Rikki said...

X, you are a gem. Honestly, you are one of the most thoughtless, selfless, people I have ever NOT met. You have good kharma coming your way brother! To be so supportive of a friend in need..very classy.

Here till the end,
Rikki

Dondi Tiples said...

Went straight ahead and signed the petition. 621 signatures only, including mine. Not enough to go on.

Tyler @ Building Camelot said...

I signed the petition because I've been so blessed with healthy little girls and this breaks my heart. Someone else needs to sign it right away because I was number #666 and, well...someone else just needs to sign it for good luck.

Laurie said...

I signed, Box.

Okay, this is one little way that your infertility may benefit the greater world. You started this blog, have gobs of readers, and maybe Ivy can get her meds.

Or can we fundraise?

April said...

Oh this is incredibly heart-breaking and upsetting and fucking IRRITATING that doctors have the final say in your family member's life...it's just so unfair. I'm going over to sign the petition right now!

Xbox4NappyRash said...

@Everyone - Thanks for signing, sorry you got hit with the 666 Tyler ;0)

Thank to everyone again who has spread the word a bit.

womb for improvement said...

Well doe for using your very well read blog as a force for good (not just the usual evil out-pourings) hope it makes a difference.

BusyDad said...

I hate getting pissed off in the morning. But some things are worth getting mad about. I signed it, and I wish the best for the whole family.

Karen MEG said...

Ivy is just a doll... I signed it earlier. Bureaucracy at its worst with these numbskull decisions.

And you're a doll for highlighting it again.

Jane G said...

What a gorgeous little girl. I have a niece the same age so this really struck a chord with me. I hope the petition will do some good, well done on posting on here about it

Xbox4NappyRash said...

@Everyone - Thanks again for the signatures, and the stumbling, and the reposting, and everything.

It HAS worked, and you shoudl head over to Tiff's, or Veronica's to see the good news update.

Jo Beaufoix said...

Signed. I read about Ivy over at Sybil's I think, or maybe Lilacs. I hope she gets the help she deserves, she's such a cutie.

kittyconcerto.com said...

I signed. #1333 and my lucky number is 3. There are three three's in there and that's a lot of luck!

Jared said...

A little delayed, but I signed. I hope she gets the treatment she needs. Governments can throw away money on stupid things like giving welfare to people that can work, but are just too lazy...but they can't help a little girl that has done nothing wrong. I say elect XBox president (or whatever they call the main person over there in the UK)! :D