Copied with permission from Sleepless Nights.

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

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I just have to add, that I’ve been reading Tiff’s blog (Ivy’s mom) for months now, and the fact that there is treatment available out there, but that she’s not allowed to use it, just blows my mind.  It’s so very very unfair!

… and I hate that people I work with know about it… some days.

I’ve made the other post private (it’s not gone completely because it’s how I feel).  I’ve come to my senses.  I have to be sensible… I suppose.

It’s just going to cause too many questions that I can’t deal with right now.

Man, it’s been hectic!  And we’ve had problems with internet at home, so I haven’t been able to update my blogs (oh, and not to forget the Blogspot problems – so I’m definitely moving self-hosted now – well, when I get back home)

I’m sitting at the beach, listening to the waves   More on that later!

On Wednesday night, I met a few friends for dinner.  Sarah is in town (or was) from Uganda, so we just had to have a girls night out.  What a stunning time we had!  Good food, good wine, good friends…it can’t get any better.

Sue and Roanne

Sarah, me and Fiona

Anyhoo, got to run, have to put the kids to bed and have more wine

Can’t decide what to submit for tomorrow’s camera club meeting!!

Oh crumbs, why is it so difficult?!?!!  I can find fault with EVERY single photo that I think about submitting.  I really wanted to submit a portrait, but I can’t think of one that is good enough!

So I’m going with a hairy cactus (which Lance thinks is crap), the pineapple lily flowers and a sunset (the scaffolding one). Hope they do OK.

I really really want to submit a portrait though.  So if any of you bright people out there in bloglandia, who read my blogs, can think of one that you really, really like… please let me know ASAP!!

I did this a few weeks ago, and I’ve decided that I need to do it more often.

I learnt these very random things yesterday at my parent’s house when we went there for a braai (bbq).

1. Connor is a very sweet soul… at times… he was very eager to give his cousin Erin any toy she wanted to play with. Saying that though, I know that he’s not a push over like Bradley was/is… he’ll stand his ground eventually.

2. Carl (my brother) prefers to use his aperture setting on his Nikon, than the full manual setting. Makes sense for now, but I want to figure out how to adjust the exposure and the aperture settings on my camera – I can’t work it out at the moment.

3. My parents are going to Columbia next year for a wedding. How cool is that?!! I’d love to go there!

4. Carl is entering the Master’s Cup of Photography again (he was a finalist last year in the Photo Journalism section). But, he’s stopped going to camera club for the same reasons that the one commenter noted on my photoblog yesterday… it’s too hierachical and the same people get the awards all the time. We’ll have to see whether the camera club Fiona and I have joined is the same.

5. The refugee camps on the East Rand are the biggest in Jo’burg (from the Xenophobia attacks). One houses 15000 people and another 25000 people. I didn’t realise they were so big.

6. There’s a new refugee camp that was being erected with UNICEF tents in the grounds of the Boksburg Fire Dept this weekend. Apparently even the mayor didn’t know about it! My SIL’s friend lives on the property. Quite right so, the residents are up in arms. I would be too! Yes, I feel desperately sorry for the refugees, but there have been so many reports of violence in the camps in the last few weeks… and the firepeople don’t have proper security on their houses! It’s going to be a disaster! They’re expecting 1800 people… and have only supplied 5 portaloos! 5 loos for that many people!! It’s a recipe for disaster!

7. And back to nicer stuff… Elaine (my sister) has got 3 distinctions so far for her mid-year results in her honours year!! She’s too damn clever!

8. Some of the car manufacturers have graduate trainee programmes that looks fantastic!! Hope my sister can get into one of the car programmes like she wants to, when she finishes her studies at the end of the year.

9. The best kind of lunch = braaied steak and wors with salad and garlic bread! And the best part… spending the time with family!

Don’t you love the way that conversations ramble between the arb and more serious stuff.

Oh and then, I learnt this last night….

You remember that friend of mine that was attacked in her home at the end of last year? Well, there was an intruder on her property last night!! I can’t believe it! She’s got lazer beams in the garden, electric fencing and a house alarm now… and someone still managed to get to their kitchen door without setting anything off!!
Scary shit! I can’t imagine how they’re feeling tonight. Hope their kids sleep OK!

It won’t let me post!!  AAARrrggghhhh!!!

So, finally, I’ve decided what to do about my blogs. I’m sure you’re all very tired of hearing about my dual blog dilemma by now

I’ve decided to keep 2 blogs, this one will remain the same.
I’m going to move the photoblog though… to it’s own domain… and continue with the photo-a-day. The only problem is… what do I name it?
I think I want to take my photography more seriously, so do I use my real name?
The only thing I don’t like about that… is… well… it’ll be my real name plastered all over the internet and you’d be able to google me!  Plus, I think my name is quite boring… so it wouldn’t be grabbing enough.
I’ve thought about my initials, but it turns out that jvphotography.com or javphotography.com and all it’s variants have been used already.
I’ve thought about my first name only, but jeanettephotography.com and photographybyjeanette.com have been used too!

I’m too braindead at the moment to come up with a witty name either… so I’m rather stuck now.

Oh well, you’ll just have to watch this space… hee hee… talk about indecisiveness!!

A year ago it was Facebook that was all the rage, then I started blogging properly and lost interest in Facebook because of the blogs I was reading.

Then a few months ago, one of the bloggers introduced me to Twitter.

And now… there’s Plurk!

So, like the sheep I am, I joined that too Now this looks more interesting than Twitter! I like the graphics.

In fact, these social networking sites are catering more and more for the Generation Y crowd. It’s all about visual, quick messages. This one in particular is very cleverly designed.

And speaking about Gen Y, I have come to the realisation that I’m typical Generation X.

If you’d asked me a few years ago, I would have laughed at you. I hate being put in a box. But I have to admit, that I am. I’m more likely to listen to another person’s opinion whether that be on a blog or during a conversation, than I am to ever read a piece of research! And that’s apparently a typical Gen X trait.

Go figure, no wonder I love blogging so much.

And speaking about blogging… I’ve made it! I finished my year of a photo-a-day!! So now…. I think I’m going to carry on with it

I read about this news story on a forum that I frequent… it caused quite a stir this morning… and quite rightly so!

The full story is here, but basically there’s a court case in Cape Town at the moment where the parents of an 8 year old are trying to get his school to take him back after he made a younger kid have oral sex with him, and then threatened to kill him if he told anyone!

The mind boggles!

A few things bother me about this story…

1. Obviously the fact that this happens in primary schools is VERY concerning… and extremely shocking… and very sad. And I get scared for my boys… but enough of me and my fears…

2. I immediately start thinking about why this boy would be doing things like that… and the first thing that springs to mind is that he must be sexually abused at home. Why else? It’s not normal, by any stretch of the imagination.

3. Kids are cruel. Everyone knows that. So why are his parents insisting that he goes back to that school? Just because his name is being kept out of the papers, doesn’t mean that the entire school doesn’t know who it is. If I were his parents, there is no way on God’s earth that I’d let my son go back to that school. Are they that intent on making him more of a social reject? The kid’s got his whole life ahead of him!

4. And lastly, the comment by the Western Cape Education Head…

He apparently claimed that in this particular situation, it had not been proven that the eight-year-old had been able to distinguish right from wrong. He suggested the boy and other pupils who had been involved receive “urgent intensive therapy”.

WTF??!?!? I’m sorry… I don’t get it… so now… if an 8 year old kills someone in the playground but can’t distinguish between right and wrong, he should be given a slap on the wrist and be told to “play nicely”?

This entire story stinks!!

… again… yes, both of them.

I actually forgot to blog about the last bout 2 weeks ago, but this time Bradley is worse.

We took Bradley to the doctor on Sunday, he has croup.  And guess what… there are no cough mixtures on the market without sulphates or sulphurs!  So, the only thing he can get is cortisone, and stuff in a humidifier!  Which is ok… anything but getting Steven Johnson’s Syndrome again!  It’ll just take longer for him to recover.

He’s back at school today, but I’m hoping that he’s ok.  He looked decidedly pale last night before he went to bed and in fact a bit blue around his eyes.  We’re watching for signs of the Steven Johnsons closely.  On Sunday we got quite a fright because his lips were bright red in the evening, and last night the soles of his feets were quite red… but it seems to go away.  In a way, I think we’re watching him too closely… kwim?

As for Connor, he’s got a runny nose and a cough again.  If it gets much worse we’ll have to take him to the doc too!  We had such a bad night last night, he barely slept because he couldn’t breathe. 

Hopefully we all get more sleep tonight.