I don’t usually do this, post twice in one day that is, but there is something that connects me to this cause in ways I never dreamed of…
A while back I found a blog… this blog… Three Ring Circus. Initially I just liked the funny banter, the gorgeous photos and the way that Tiff wrote about every day life. Of course, Tiff is the mum of two sets of twins, so that makes her a super hero by default…. but after a while of reading her blog I also realised that she is an amazing mother and one hell of a strong woman. Apart from the fact that we both have twins, she and I have other things in common, things that I never thought would ever connect me with anyone… let alone another blogging mum.
Tiffs gorgeous little girl, Ivy has phemphigus (this link has images of Ivy’s blisters – be fore warned they are not nice but important to see and understand). It’s just a symptom of Ivy’s immune deficiency issues but it’s a really horrible one. I know, because I have it too.
I am lucky though. I didn’t suffer through the horrible blisters as a child like Ivy has. I didn’t have symptoms until I was in my late teens and for me it was only on my hands and feet, yet that was bad enough. I am very lucky because for me it was an isolated problem, not part of a larger, nastier more life shattering illness, and at the moment, it has all but gone away.
Yep, I am very lucky, unlike little Ivy who suffers horribly from these nasty itchy, burning blisters that take off layers and layers of skin. That pop up without warning and take forever to heal. That require medication (predisone) that makes you feel horrible when you are on it, that comes with a wide range of nasty long term side effects and that suppresses your immune system even more. For Ivy this is just one of the battles that she has to fight. She is also fighting constant illnesses like ear infections that for a normal child would be nothing more than a few days on anti-biotics but for Ivy, mean hospital stays and missing out on all the things that a little girl should be out there doing….. playing at the park, going shopping, going to preschool.
There is one other thing that connects my family to Tiff’s family…. IVIG.
IVIG, intravenous immunoglobulin. Human antibodies taken from the plasma from blood donors. IVIG would help Ivy, it would give her a chance to stay out of hospital, maybe go to preschool.
I know about this little known treatment, because The Baldy Boy makes it. Unfortunately, while he processes the blood products and creates IVIG almost every day he is at work, he doesn’t get to decide who is eligible to receive it. Somebody else does that. Someone who doesn’t know Ivy, who doesn’t know her Mum and Dad, her brothers and sisters. Someone who doesn’t know what having burning blistering skin is like. Someone who doesn’t know how much Ivy would thrive at preschool. Someone who doesn’t have to sit by and watch their little girl in pain.
I am sure the bureaucracy has all their rules and limits for reasons, possibly even good reasons, but Ivy is a ‘good reason’. Every child deserves to be happy and healthy, Ivy deserves to have that too.
Go sign this petition… see if we can get the ‘powers that be’ to re-consider… to give Ivy and her family a chance to be happy and healthy