Please help Ivy lead a normal life! Important Message.

This message has been approved by our fantastic moderators, who I thank so much for letting me put this here.

Many of you would know Tiff aka Tiggy from the forums. This thread is about helping her daughter Ivy who is 2 years old.

Ivy has a rare immune deficiency IgG and because of that Ivy has Pemphigus which is an autoimmune response to the IgG

Please click here to see pictures of Ivy's Pemphigus but do know that they are graphic.

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.


The Help Ivy Lead A Normal Life Petition to Australian National Blood Authority was created by and written by Veronica Foale (veronica@somedaywewillsleep.com)

Veronica is a lovely lady who started the petition, I am only posting here because Im trying to help wherever I possibly can.

Please, could you sign the petition. Send this on to your family and friends and if you chat to other members, who dont usually come into this part of the forum, send them in here. Tiff is one of us, and needs our people power help NOW.

Please sign the petition here

http://www.petitiononline.com/ivygirl/petition.html

and lets send Tiff and Ivy and the rest of the family all the well wishes and good thoughts we possibly can.

Thankyou so much, again to the moderators and especially Astrolady for allowing me to put this here. What bigger platform could I have? Thankyou

I've signed it and forwarded it on.

Petition signed.

If only we could do more..... poor little girl

Poor little munchkin :(
& William's story is heartbreaking too :(
Thinking of thier families.

Are they going to the media? Surely would pull at heartstrings and anger....

I've signed it. I hope it lends some weight to Tiff's case.

Oh wow... poor little Ivy :(
I am posting this to all of my friends on facebook... hopefully I can get them all to sign it too.

Thanks everyone for signing and sending it on. Its been great watching the numbers jump this afternoon. :D

I believe one of our other BB members has sent an email to TT, but as far as anything else goes Im not sure. I think its a fabulous idea and if the media could get involved it would surely be a positive step.

I know that Tiff and her family have written to their local MP and it was handed on to the Minister of Health on Friday just passed so we all have fingers and toes crossed that makes a difference.

Any news I will certainly be back here to let everyone know.

If anyone else has any ideas of how to help, Id love to hear them. I would love to be able to really help the family, I just dont know where to start.

Thanks again everyone xoxoxo

I'd be sending in the story and pictures to all the morning & current affiars shows they will do work for you too, investigating...

ps. I am in frequent contact with the shadow health minister here, maybe you could email the letter to me and I will froward it on?

that poor little girl :( makes me sad ..

Signed.

:hug: For sweet little Ivy. Such a beautiful little cherub!

Signed, forwarded and added to my FB page too.

Poor little Ivy. And poor Tiff too. You have already been through so much huni I am sorry to hear ou have been thrown yet another hurdle :hug:

Unbelievable how can the Government just let this go Poor child ill be praying for her and the family.

Signed

Can I ask - what was the reason they gave for refusing the request?

Signed here too. The pics made me cry poor Ivy. I hope the petition works.

i remmeber tiff and her tribe from here
poor ivy- thank goodness she has such a beautiful family around her
signed and sent on!!!
good luck
hang in there

odette

poor lil mite.
ive signed and im going to send off in to some friends

signed :)

I've already signed this via another website........I really hope they can get this for sweet Ivy, and that she feels so much better soon :pray: Tiff, if you're reading this :hug: for you.

Signed

Hugs to Ivy and her family

oh Poor little Ivy. It must be so hard for her and all your family to have to endure this horrible thing.

I cant believe they wont let her have the treatment she needs. Why would they want her to be in hospital so often and have to continuously suffer from this? I think thats just so cruel. I just dont understand it.

I've signed the petition. I really really hope they reconsider.

signed it, I am going to forward this to work too

The reason why they would have said no (and the reason sucks in my opinion) is that IVIG is very very expensive and in very short supply...it takes a huge number of people to donate blood for them to extract enough IgG for one transfusion and for a case like Ivy she would need more than likely need more than one transfusion.

I know this because my best friend was very very ill a few years back and needed IVIG to boost her immune system as it was breaking down and she was hopitailsed for months unable even to walk and in constant agonising pain...it took months for the doctors to get clearance for the transfusions...she had 3 and it cost an absolute fortune from memory......she is now fully cured!

I have signed and think as well as this petition people should give serious thoughts to regularly donating blood as that is the big reason why the shortfall in these types of treaments occurs in the first place...... just a thought for what its worth....

What is wrong with this world?? :(

Signed and placed in the hands of media to hopefully create a bit of publicity

EDIT: Exceptionally good point melbel ... will make a visit to blood bank tomorrow & mention that my donation is to support Ivy!

Sucky reason .. but I can see how that can be a problem

Signed the petition .. and if I were in Aus, I would go stand in line to have my blood taken, I would stand in line 10 times!!

Can you organise a blood-drive??

Goodluck with everything Tiggy!! My heart goes out to Ivy and your family!! :hug:

SIGNED !!!!!!!! .... with a large, loud & clear message added !!!!!!!!

I myself have a 2 year old daughter & this story rips my heart out ... OMG, what is happening in this world when we can't help a child who clearly can't help themself get well. We can't always wait for a miracle ...

My heart also goes out to IVY's parents xoxoxoxox

signed. poor tiff and ivy and of course the family.
:pray: this works :hug:
take care
rach xxxx

:

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Can you organise a blood-drive??

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Great idea! I would definitely donate.

WOW! What a huge response. The petition is over 1000 now! :clap: Well done ladies! Im amazed and so happy!


A few media outlets have been contacted now and I believe thats a great beginning. The story is out there, now its up to them if they want to pick up the story, I guess. Im not too sure of the process. We all still have our hopes pinned on the appeal pending. Lets hope the Minister helps out. :pray:


Im so happy that so many people have wanted to help, and I know Tiff is too. Kelly I appreciate your offer to send it on to your contact, I will email you soon. Thanks heaps.


There is more info on IVIG if you go to www dot nba dot gov dot au
They have so much information there. But I believe melbel has answered it perfectly.


Isnt it just so strange that in this day and age, its even a question if Ivy is suitable? Its not like people without illness are asking for IVIG! I understand it, but its just so hard to believe. Where price can even come into it, if it involves a life. :confused:

A blood drive sounds like a great idea!

Well I just got the best news ever.

:dance:

Ivy was approved this afternoon for IVIG.

She starts tomorrow.

Thanks so much everyone for all of your help. You have no idea how much you have helped Tiff. Just the very thought that so many people care has made such a huge difference.

Everyones signatures, I mean did you see how many there were? Absolutely amazing.

Im so relieved. Ive not even met Ivy, but the very thought of her suffering any longer was eating me up. I cant imagine how the family has handled it.

However now there is such good cause for celebration.

I dont think we could ask for anything more.

Its huge.

Its life changing.

It happened!

Thankyou so much !!!!!!

:clap:

:cheer::hooray:

WOO HOOOOOOO! Fabulous news! I hope they don't back out.

Signed and Facebooked. Poor little poppet. :hug:

ETA: I didn't read through all pages because I was bawling but they are now tears of happiness! :hooray: I hope it gives Ivy and her family some much needed relief.

go the power of the people! :cheer: :cheer:

I met little Ivy a year or so ago and she is such a treasure. I am so so glad the treatment has been approved. That is just the best news ever! :hug: to Tiff and Ivy. Yay!

That is fabulous news .. hopefully Ivy will be healing very soon!

That is just fantastic. WTG girls and guys. What an awesome response and how very fantastic for Ivy, Tiff and their family. I hope this is a huge step in easing Ivy's discomfort and pain.

WOOHOOO :happyforyou:

Tiff, Dave & family, I am so THRILLED for you! :) Can't wait to hear the updates from you Tiff at the hospital and may it be the last time you're in there with Ivy for a very long time :) :hug:

Just goes to show the power of people. Thanks Kate for working with the mods here to have this thread! :)