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except you haven’t tried everything available to you. You continue to not get the surgery for Luella that could potentially improve her seizures. Yes there’s no guarantee but is it really fair to keep doing this? When there is an option?
Imagine agreeing to have your kids brain hemispheres severed? It's fucked, wouldn't you agree??
 
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Sleepyapple

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Seems they feel entitled to the help. I don’t know if NDIS is means tested? I don’t know enough about that (not from Aus). Didn’t they try to get a carer for Lu through NDIS and got denied, or didn’t get offered full time help so they decided to get one themselves with a GFM campaign? They’re very entitled, aren’t they?

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Also her own live about CBD and she couldn’t look more bored if she tried. LOL
I don’t know. I think Rachel started the GoFundMe and she said Erin didn’t know beforehand, and I don’t think she’d lie about it.
 
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sparklingtrac

Active member
Well, I think they might disappear if it starts to get too painful for them to watch poor medical choices being made. I’m wondering if their families were upset they didn’t go ahead with the surgery and that’s why they are absent. Because their disappearance from Erin’s page roughly coincides with that decision.
True. Hadn’t thought of that. I was thinking it coincided with Chrystal coming on scene

I find it hard to imagine her parents not seeing Luella anymore especially if they were worried about the surgery thing. Don’t you think they’d want to be involved to ensure she’s still thriving? Maybe I’m wrong
 
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sparklingtrac

Active member
So true!!

Absolutely agree with them using NDIS funding - raising a disabled child is more expensive than if they were not disabled, and access to respite is so needed. But to fundraise and take money from others when they have plenty themselves is just so wrong. Profiting off your kid's disability is so wrong.

She acted like without this GFM they couldn't afford a support worker. I find that so hard to believe. I asked a few of my banker mates and they said it is likely that someone in Dave's position is earning $500k/year. But it is what you said - they don't want to spend any of their own money, or heaven forbid have to sell some shares or sell an investment property to help Luella.
Seems they feel entitled to the help. I don’t know if NDIS is means tested? I don’t know enough about that (not from Aus). Didn’t they try to get a carer for Lu through NDIS and got denied, or didn’t get offered full time help so they decided to get one themselves with a GFM campaign? They’re very entitled, aren’t they?

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Also her own live about CBD and she couldn’t look more bored if she tried. LOL
 
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boysenberry

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Lu did look very unwell to me in the videos she shared (but obviously I’m not her doctor). I was surprised she was sent home the first time. I agree erin makes everything worse with her attitude but I just really hope everything is ok.
 
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santababy

Chatty Member
In my experience its actually the children with difficult parents who get 'all the things'. Sure, nobody wants to go near them at risk of being abused or getting locked in a cyclical argument, but the children themselves don't get blacklisted. They usually get whatever the parent wants because, despite being told otherwise, they won't accept the opinion. For example when the doctors recommended a hemispherectomy in NSW and Erin went down to RCH in Victoria for another opinion. Another example when she had genetic testing and it showed nothing and the doctors told Erin there was no point in doing comprehensive genetic testing. So she strongly argued for this and voila got extremely time consuming and expensive genetic testing that got sent to America. Showed nothing. Other kids out there with this condition aren't getting this...


I want to add that in no way am I saying you shouldn't strongly advocate for your child. But there has to be a balance of fighting when you think there has been a disservice vs accepting the medical opinion of specialists who have been in the field for multiple decades.
Agree with you whole heartedly ❤
 
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Little Miss Influenza

Chatty Member
Weird that it would take so long for results so shes only aay it now. Some of the common things I hear about without a rash and where you can be dangerously unwell are meningitis, sepsis and strep but I know there's thousands of possibilities. I just don't get the baiting.
 
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Maisiemouse

Active member
Yeah she is looking terrible, really concerning she's not recognising Erin and she's on oxygen. Wonder what's going on with her
 
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influencerstalk

Well-known member
My sons disabilities require him to have an annual brain MRI under GA at a children’s hospital. It’s an all day thing. Also 90 mins from where we live. I don’t know what la la land Queen Erin is living in 😂 Why is she still complaining!?!?
She lives at Matraville… so not far at all from the children’s hospital - maybe a 10-15min drive. But she said it took them 1.5 hours to get home…. So either she is being very dramatic or it wasn’t at the children’s hosoual at Randwick. I would have thought it would at least be in Sydney though ?
 
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There we go - a meme about grief. Obviously been reading here again. Hi Erin! Always nice when you acknowledge our presence! Lol
 
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Maisiemouse

Active member
Aaaaahhh no. Let’s not start alluding to the parents being to blame for her condition. Let’s just not. We can not like Erin but she certainly didn’t cause her child’s condition, they believe it was to do with her brain for within in utero. She started showing symptoms at 4 months old when I would guarantee they weren’t throwing her in the air.
Yeah I have to agree...big difference between forcefully shaking a baby vs throwing up in the air. It's not the same mechanism and doesn't cause shaken baby syndrome.
 
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influencerstalk

Well-known member
I was wondering if she was still with the one who emailed her and told her off for trying to go around him 😂
She is going pretty hard…😬 and it’s sure to get back to them. I doubt the neuro said it soo comes down to money ? The neurologist isn’t paying for the script.. they would just prescribe the most appropriate medication.
 
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santababy

Chatty Member
I don’t believe they’ve ever actively said what caused it

She’s hinted a few times but I don’t believe they still have a concrete answer
 
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Sleepyapple

Well-known member
If she was sole carer of Lu, not going out to lunch, not getting help or having her hair done I could understand how she would be exhausted and saying “our quality of life”
But it’s Lu’s quality!
To be fair, I think she was the sole carer until recently. It’s reasonable for her to have burnt out. I still agree with generally everything said here, but I do think Erin’s attitude around Luella has worsened in the last six months. Although she’s never been overly positive, prior to Crystal coming on board she did seem to play with Lu (albeit not at the park) a lot more, and was the primary carer.

I’m not defending her here or disagreeing with you, but as a mother of a medically very complex child I will say when the child’s quality of life is poor the entire family suffers. And whether it’s my medically complex child or my healthy typical child who is under the weather, or struggling in some way, I would say as the mum I feel all of their pain and suffering too. Hope that makes sense
But you’re right she’s self centred and complete narc
Yes, this! There’s so much I’m critical of with Erin, so I’m not defending her, either, but if my child was suffering acutely for much of the time, I’d struggle to say I had quality of life, too.

Looks like Krystal at the sink doing dishes while she whinges on the lounge about being so sleep deprived
She does have a young baby. Again, Erin bothers me greatly, but I don’t think it’s necessary to act like mums with young kids shouldn’t have help with housework, if it’s possible. The crux of the issue is that she’s depriving Lu of the surgery.
 
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Notamused

Active member
Good on Erin I say. Damned if she does something damned if she doesn’t. That little girl needs urgent attention - I’d be yelling at the nurse too if they denied my kid medication that would help calm things down for a couple of weeks over Christmas.
 
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