Things I just found out today:

  • My mother in law is coming.

  • In 8 days.

  • And is planning on staying with us.

  • For two and a half weeks.

Help me?

No.  Well, here's someone you actually can help, who really needs it.  My friend Tiff @ Three Ring Circus, she has a little girl and....oh, who am I kidding?  Veronica @ Sleepless Nights said it best; I'll just cut and paste.  Read on, take a minute, sign the petition if you can.  Which, if you don't think those things make a difference, they do.   The CEO of the International Pemphigus Foundation found Veronica's post, forwarded it to the blistering Specialist that Ivy saw way back in January, who just happens to be on the board of the Pemphigus Foundation.  These things work, they make a difference, they may just help a beautiful little girl and her family.  (Edited to note: From the time I hit publish and went to bed until the time I got up this morning, the petition worked.  She's getting the treatment. Thank you all so so so much.)

Cut and pasted from Veronica's blog, with consent and thanks...

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 the Petition

Tomorrow, maybe, we can talk about my mother in law.