expose
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Category: General Chat
Forum Name: General Chat
Forum Description: For mums, dads, parents-to-be, grandparents, friends -- you name it! And you name the topic you want to chat about!
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=4017
Printed Date: 14 October 2025 at 9:38pm
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Topic: expose
Posted By: lizzle
Subject: expose
Date Posted: 10 October 2006 at 9:43am
| I was making a card for my BIL (just had a bubba last night!) and had TV on one. they had a documentary on about these girls who had harlequins disease. It was soooooo sad. anyone else see it? while I watched I just sat there thinking, Thank GOd I have healthy children!!! |
Replies:
Posted By: mummy_becks
Date Posted: 10 October 2006 at 10:17am
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I missed it and so wanted to watch it. I had a musci practise for a beerfest I am playing in, in a couple of weekends (who would let a pregnant woman at a beerfest!!!!). What was in it? ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: littlejo
Date Posted: 10 October 2006 at 10:54am
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I saw that too - so very sad. What a tough life those families have.
They produce too much skin and it's really thick & tough, so makes it difficult to move. The kids have to bath for up to 2 hours twice a day, and rub the skin off. And then get coated in cream. I think they said that over night the girls produced as much skin as you or I would in 2 weeks! ------------- Jo Jo http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: mummy_becks
Date Posted: 10 October 2006 at 11:01am
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I have seen something like that before, very hard to deal with. ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: Bizzy
Date Posted: 10 October 2006 at 11:12am
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i saw some of it - i got really upset and mad at that family who chose to have another baby knowing there was a 1 in 4 chance she could have it too. ------------- http://www.myfitnesspal.com/weight-loss-ticker"> 
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Posted By: littlejo
Date Posted: 10 October 2006 at 11:40am
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Yeah, that was a bit rough - especially as it sounded like the Dad didn't want to risk a second baby having the same difficulties...and then she was born with the same problem PLUS cerebal palsy. ------------- Jo Jo http://lilypie.com">
http://lilypie.com">
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Posted By: Bombshell
Date Posted: 10 October 2006 at 11:56am
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i took it a totally different way - the parents knew the risks so chose to hold off having another child until they knew the older one could cope and help with her creams etc and then they took a breath and took a risk...why shoudl they stop at only one and knowing the outcome it obviously has helped them to deal with the second child much easier - and has given the kids someone else who is the same as them....
It was so hard to look at the baby photos of them but have to say they looked much more normal as they grew older... what a life though - to have to vaccumm all day and do washing every day like that and have two washers etc...i did feel for them...and then to know that their kids have shorter life spans couldnt be easy... makes us grateful huh? |
Posted By: Bizzy
Date Posted: 10 October 2006 at 1:03pm
completely selfish reasons to have another baby and subject them to a life like that. if they really wanted another child they could have adopted. that child never asked to be like that but the parents knew she could have been. ------------- http://www.myfitnesspal.com/weight-loss-ticker">
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Posted By: lizzle
Date Posted: 10 October 2006 at 1:04pm
| The worst part was when the younger sister had said to the older one "when we get better.." and the older one had to sit her down and say "we won't"...sniff sniff. But then the little one made a birthday card for the older one and was saying how it was nice that both of them had the disease as they could be each others friend and help each other. so sweet! I always thought though if the younger one didn't have the disease, the older one might feel like the parents loved the older one best. My bf had a older sister with cystic fibrosis and she used to be sooo jealous of the attention her older sister got. |
Posted By: Carmel
Date Posted: 10 October 2006 at 3:23pm
I saw it as well and nearly cried
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Posted By: EllenMumof2
Date Posted: 10 October 2006 at 9:00pm
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Very sad makes me think im lucky to have healthy kids http://lilypie.com">
  http://lilypie.com">
 
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Posted By: Maya
Date Posted: 11 October 2006 at 6:59pm
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I didn't see expose, but I do agree with Deborah about the decision to have another child, hard as it may be.
When my brother was a baby he was diagnosed with Cystic Fibrosis. Mum and Dad made the decision not to have any more kids as it's genetic and there was a high chance of their next child having CF as well. They figured they had just got lucky that I didn't have it, and the risk of having a child that was going to have poor quality of life was too high. They had always wanted a big family and Mum still talks about hard it was to decide not to have any more. But she says spending time with the CF society and CCS only reinforced their decision, especially when they saw families who had 2 or 3 children going thru the same horrible disease. In the end it turned out he didn't have CF, he had another problem with his pancreas that caused a positive heel prick, they found out he didn't have it when John was 2 and 9 mths later pretty much my sister arrived on the scene. -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: lizzle
Date Posted: 11 October 2006 at 8:10pm
| CF was pretty nasty. my friends parents had friend1 - who had CF and then obviously made the decision to friend2 despite the knowledge that she might have had it too. Luckily she didn't. She said that when she was pregnant she was really scared that she would be a carrier. |