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Original poster

Alfie Evans 7

926 replies

StayingAtTamaras · 26/04/2018 23:25

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QuackPorridgeBacon · 08/05/2018 17:20

People seem to think transplants are the fix. But they aren’t, they are fantastic but it’s not easy. There are many reasons not to be able to have one, I know. One reason is if they don’t believe you will have a decent chance at life then you don’t get one. Then there is matching and who is in more need of more people match the same organ etc it’s tough and afterwards is not at all easy. My daughter had a heart transplant, so quite a big deal really and there was a whole day of waiting before we even knew that the heart she was offered was suitable and if she would even get it. Luckily she did but life is still so hard afterwards. There has to be a good reason if they think it wouldn’t be worth it. Not easy on the family though I imagine.

BangingOn · 08/05/2018 17:53

Quack that must have been so hard. I am involved with a charity for people with a rare heart condition and know several people who have had, or are waiting for, a transplant. How is your daughter doing now?

This has been discussed previously on these threads, but the phrase that keeps coming up again and again is ‘fighting’. I understand that parents need something to fight for, to fight against, to feel like they are doing something.

That said, when DS had cancer I hated people referring to him as a ‘little fighter’ and his ‘battle against cancer’. I don’t like the implication that you live or die according to whether or not you fight hard enough.

QuackPorridgeBacon · 08/05/2018 18:04

Ill be honest. I did and have still used the word fighter. But she really did in my eyes, obviously she was young so it was all out of her control, but she used to fight the ventilator I guess lol

She’s absolutely fine though. Still doesn’t eat, doesn’t talk still in nappies etc and will for a long time. Probably as she gets older and walks more she will be a lot more tired. Still vomits and has feeds adjusted and blood tests and all the rest of it regularly. We fly to England every so many weeks for a check up there. She can’t be in the sun as it reacts with her medication, she can’t be cold because she goes blue etc and catches everything going. But, she has loads of happy times and is a daredevil and knows how to have fun. She will be three soon and close to the end of the year she will have had her heart for three years too. She’s amazing and takes whatever is thrown at her and fortunately, doesn’t know any different. For her, it was worth it. She had dilated cardiomyopathy with an EF of 12% so according to others with her condition, she is considered very lucky that she doesn’t live with the condition itself. She’s a very lucky girl and strong to have held on the way she did. She’s a little poop at times too so she’s clearly making he most of her life lol

QuackPorridgeBacon · 08/05/2018 18:05

But I completely get what you mean with regards to the word fighter. If they do pass away, it is in no way because they didn’t fight hard enough, and it would seem insulting to think so. I think it’s a word that’s used for one side of the coin but never the other.

BangingOn · 08/05/2018 18:13

I can see why you do use the word Quack, it sounds like it describes your DD well and I know IABU to dislike it so much. As you say, it works very well for one side of the coin.

QuackPorridgeBacon · 08/05/2018 22:00

Not unreasonable to dislike it all. But yes it only works for one outcome really. Everyone is entitled to feel how they do about it, especially with regards to children.

BangingOn · 09/05/2018 06:27

We had a good (and relatively quick) outcome, I may well feel different if my child was undergoing treatment for many years.

QuackPorridgeBacon · 09/05/2018 11:39

That’s good news. I’m glad your son is ok, it must have been a terrifying time for you both.

Newname12 · 09/05/2018 14:06

Well after all the “we love alfie and if we want to release balloons we will he is more important than humans or animals”

A grand total of 5 people turned up at his “birthday memorial”.

WhatCanIDoNowPlease · 09/05/2018 15:44

5 people? Where?

Newname12 · 09/05/2018 15:54

It’s an event arranged in my local city. I think over 500 said they were “interested” last week, there has been lots of fighting over balloons and how alfie’s memory is more important than “the death of any animal”.

There was supposed to be someone laying on refreshments and all sorts.

dontbesillyhenry · 14/05/2018 13:54

Was Alfie's funeral this morning. It's so sad now he's passed away there have gone from thousands of posts on the army page to a few hundred. Now there's no more frothing about doctors and nurses murdering an innocent boy nobody seems to care. This is when his family will need to support the most this is the start of their journey not the end

derxa · 14/05/2018 13:55

Thoughts with Alfie's parents today.

mycatistoofat · 14/05/2018 21:44

Sad that may be a good thing that they have stopped posting though. Let things calm down. Very sad for the family today.

mydogisthebest · 15/05/2018 07:56

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QuackPorridgeBacon · 15/05/2018 10:39

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Berthatydfil · 15/05/2018 17:52

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QuackPorridgeBacon · 16/05/2018 22:55

MNHQ Exactly what rules did I break?

QuackPorridgeBacon · 16/05/2018 22:55

Sorry, guidelines...

Original poster
StayingAtTamaras · 16/05/2018 22:58

@mydogisthebest @QuackPorridgeBacon @Berthatydfil what did you say/what was your post about?

OP posts:
QuackPorridgeBacon · 16/05/2018 23:25

StayingAtTamaras I just replied to another poster (who mentioned someone filming the party? after the funeral) saying “it does seem bad taste” or something like that, I can’t remember verbatim what was said.

catinboots9 · 16/05/2018 23:52

Gawd I've missed all these deleted posts but I think they were something to do with the family having live music and dancing at the wake

Berthatydfil · 17/05/2018 08:08

Yes similar.

mydogisthebest · 17/05/2018 08:11

Yes my post just said there was music and a disco and that it was live streamed to facebook. Just that, no negative comment or anything.

Ridiculous that it was deleted. Good to see freedom of speech is alive and well on mumsnet

QuackPorridgeBacon · 17/05/2018 13:21

mydogisthebest That’s right, you simply commented that it was being live streamed, I said it does seem in bad taste. Not sure why any of those comments got deleted. If they can live stream for everyone to see them surely hat makes it ok to talk about? @MNHQ, care to answer why these comments were deleted when neither broke any guidelines?