Live Life then Give Life bulletin

nellylela · Post by **nellylela** » Fri May 04, 2007 1:01 am

Hello to all our friends

We are desperately trying to spread the news of a baby girl who is in urgent need of a liver transplant, and who will die within the next few weeks if she doesn't receive one.

Our blog contains all the information and you can read little Angel's story here:
http://news.scotsman.com/edinburgh.cfm?id=677232007

There is a tiny chance that if this story is forwarded across the UK, it might be heard by someone who (very sadly) is in a situation where they have the chance to help Angel to live.

Please help us by reading our blog and then forwarding the link as a bulletin.

Thank you!

Emma and Emily xxxx

lashy · Post by **lashy** » Fri May 04, 2007 8:39 am

very sad story.
hope someone sees this and takes action, as they said it is sad someone else has to die for her to live but i just wish people could see the immense good it does to donate a loved ones organs.

~G~ · Post by **~G~** » Fri May 04, 2007 1:55 pm

That's pretty sad.. why can't one of her parents donate part of a living liver? they do that in america. I'm surprised there's nobody around.

Unfortunately, there's nothing we can do. Other then keep her in our thoughts just like we do everyone else, needing health and organs!

Awareness isn't going to give her a liver.. as far as I know if a person dies they can't specify who it goes too...

Maybe these kinds of stories in the media though will encourage more organ donation as a whole.. I guess thath's the purpose of livelifethengivelife. That's their whole campaign. To raise awareness about organ donation. And the're doing an amazing job of it!

I hope things work out for her!! These stories hit home.

Julie · Post by **Julie** » Fri May 04, 2007 2:04 pm

This is a very sad story, I agree entirely, and that is what the Live Life Then Give Life campaign is all about - raising awareness of people affected by these tragedies in order to promote the importance of organ donation and try to get more people to sign up to the organ donor register.

However, I don't feel that KPG is the place to post these stories. At the great risk of sounding callous, and I promise I am not and I wish only the very best for this little girl, I feel I must say that this is a "kidney" board for kidney patients and their carers and families and friends. I mean... what can "we" actually do to help?

I'm sorry if that sounds selfish but we all have enough of our own crap to deal with every day and I personally try to avoid stories like this and indeed any other depressing stories (which is why I don't read the newspapers and I don't watch the news) and I really don't want to have it thrust in my face when I didn't go looking for it.

I suppose I'll get flamed now but I hope you'll understand where I'm coming from.

I wish only the very best for this little girl and her family.

Julie

Lorna · Post by **Lorna** » Fri May 04, 2007 2:18 pm

I'm afraid I tend to agree with G and Julie on this one.

It is heartbreaking that this little girl is going to die without a transplant (along with hundreds of other people in UK) but plastering her face all over the media isn't really going to help her cause. Yes, it may help the whole issue of organ donation and raise awareness for more people to sign the organ donor register, but personally I don't think it's going to help this poor little girl at all. I really hope that this baby does receive the organs she desperately needs to survive, and I can't begin to imagine what her family are going through just now, but telling her story to the newspapers isn't going to help her case.

jenjen · Post by **jenjen** » Fri May 04, 2007 2:30 pm

I have got to say that I disagree with you all entirely.
This story is relevent to all people needing transplants
Its relevant to the kidney board because there are loads of us waiting for kidney transplants.

There is a chance that by passing the story on, and putting it on the news, it might help. Say a family was watching the news one night, saw this little girl. The next day this family goes into hospital because their little baby has tragically died. They rememeber this story and decide to donate their kids organs which *might* help that little girl with liver failure.

Putting this story on this board... it might get passed to someone, who passes it to someone else... maybe the story will get passed along in this way by 10 people. One of those 10 people might read it, put it in the back of their mind, the next day, tragically, their little daugher dies. They remember the girl with the liver and say yes to organ donation, the little girl might get the liver. Or, their older brother dies, they remember the story, say yes to organ donation, one of us on this board gets a kidney transplant.

I'm not saying its going to work, but there is a slim chance that it will.
By passing the message on it *might* just reach someone who could help.
No-one knows what will happen tomorrow. This family who might be in hospital the next day becuase their kid has died is just going about their normal lives, thinking things are ok, everything normal. Then suddenly things change in an instant. Having this knowledge of someone waiting for a transplant can be enough to agree for this family to donate their kids organs.

If we all thought, "what is the point of putting depressing news about ppl waiting for transplants" then a lot of people on this board would not have their transplants today. Its only through putting stories about transplants and the ODR on the news that a switch in someones brain is triggered and they decide to donate their loved ones organs.

Every one of us here knows how important it is for people to sign the ODR. Even if this girls life is not saved, this story on the news might get one of us a kidney.

tommc · Post by **tommc** » Fri May 04, 2007 2:39 pm

I agree with Jen this board is the perfect place for this kind of story i know i have seen i t and passed it on people who are unaffect by this kind of health concern tend to brush past it where we will give it the attention it needs. I know it may not help this little girl but it may be read by someone who in the future may have to make a decision on organ donation, and this could be enough to help them see the distress familes go through waiting for a transplant and help them choose to donate.

I for one hope this little girl gets the organ she needs and goes on to live a full life. G in Britain partial liver donations are done i can only assume theres a reason they arent suitable the same as neither of my parents are able to donate a kidney.

Tom

Angel · Post by **Angel** » Fri May 04, 2007 2:44 pm

Jen I completely agree with you and I am rather upset and disappointed at the response on this board. Yes we do all have an awful lot to deal with and the half of it isn't probably bought to these boards but surely if we as fellow human beings can take a small part of our day to just pass this message along we could possibly help this girl. If we can't we have lost nothing and some other young child maybe helped in the future as well as other people who could remember this story and donate other relatives organs.
I am sure if it was any child of yours you would hate to read that people actually didn't care enough to even do a small gesture that could possibly help. I think Nelly was just appealing to like minded people who could possibly help here and it makes no difference this is for a different organ. Also just to take up G's post the little girl also needs a bowel so a live donor is not an option here I wouldn't have thought.
I think Jen put it all far better than I did as she echoed all my thoughts but it is apathy like this which means people are dying from the lack of organ donors and one day that could be you or a loved one.

Julie · Post by **Julie** » Fri May 04, 2007 2:49 pm

I'd just like to add that I have been listed on the organ donor register since I was 18 years old, I am now 43 and I am a strong advocate of the organ donor register and the promotion of it.

Additionally, I have given blood since I was 18 too as my mum was a heart patient and had artificial heart valves put in in 1972 when I was only 9 years old. She needed 8 pints of blood during the operation and I promised to give back what she had had and more.

I wanted to donate a kidney to my husband but as I am blood group A and he is blood group O it wasn't an option.

Julie

jenjen · Post by **jenjen** » Fri May 04, 2007 2:51 pm

Plus... as everyone here knows, waiting for a kidney transplant is awful because of the feeling of powerlessness that our future is in the hands of someone else.

The only way to have any influence over the process is to raise as much awareness as possible. By spreading this story around, it helps me to feel like I am doing something to help my own situation rather than sitting back and doing nothing except hoping and praying. Doing something to help raise awareness of the ODR is a lot better than doing nothing in terms of alleviating this feeling of powerlessness everyone waiting for an organ transplant has

Julie · Post by **Julie** » Fri May 04, 2007 2:53 pm

But isn't posting it here "preaching to the converted"?

jenjen · Post by **jenjen** » Fri May 04, 2007 3:00 pm

not at all

Someone on this board sees this story, passes it on, it gets passed through 7, 9, 10 people. The next day, or maybe the next year, one of those people tragically loses a loved one. They remember the story, and agree to donation.

Julie · Post by **Julie** » Fri May 04, 2007 3:04 pm

But we're all already doing that anyway - one more story/example isn't going to help. We're all strong advocates of donation and the benefits it brings and the lives it can save. So we're doing that as a matter of course, signing documents, running marathons, walking bridges, joining Myspace campaigns, raising money etc etc.

MandyV · Post by **MandyV** » Fri May 04, 2007 3:05 pm

oops - firstly I think that whilst it is highly unlikely that posting or not makes a difference, I do think that it is a highly commendable trait that people should try and do something, however remote the likelihood of success.

Furthermore it is sadly these kind of tradgedies which get press attention and help all of those of us who are waiting for that amazing gift.

BUT if you don't want to read about 'bad news' stories - then each to his own, but no reason why others cannot share hope.

Julie · Post by **Julie** » Fri May 04, 2007 3:12 pm

But they are already being shared on the Live Life Give Life Myspace site which is where Nelly read it initially and which I think most people here are already aware of. I have my own Myspace and I have them as one of my friends and I read the bulletins every now and then. I had already read this one there - through choice. I think many people here will have already.