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.
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.