My daughter died ten days ago

So very sorry for you Ali - just hang on. Can't imagine anything worse than to lose my DD so do really feel for you .

Thinking of you at this terribly sad time.

Phoenix that is so moving and so true. I know those feelings too.

Ali don't be afraid to shout your pain and anger on this forum. There are those of us who do have an understanding of what you are going through and others who will offer (((hugs))) and a listening ear.

Alie I too have lost a child, albeit under very different circumstances.

There are some countries where due to circumstances many people accept this, it is taken as "read".

However, we here in this part of the world are conditioned that children bury their parents, not the other way round.

It hurts, my dear, oh how it bloody well hurts! I can remember for quite a few days/weeks/months after he died, I would wake up and for a few seconds it seemed that all was ok, then the remembrance would hit me like a punch to the stomach.

If there was a magic wand, I would be waving it in your direction so much that it might be deemed a hazard to shipping or to air traffic.

Alie I wish that there was more I can say, but sadly there isn't, at least not here. If you want to PM me, feel free to go ahead, although I cannot do the one thing that you might want.

Sending a lot of love, and some understanding.

R xx

I am so sorry Alie. It's not surprising you feel such anger and pain. To lose a child is one of the worst pains imaginable. Hugs, strength and love to you and your family

Oh Allie I just can't find the right words either, so just send the biggest all enveloping (((((hug))))). I would, like you be angry. Very angry. Surely she should have had at least annual check ups? Perhaps if you register an official complaint? Even if it were not upheld it would at least get enough publicity to make others aware of the dangers.

alie I am not good with words at times like this but my heart goes out to you

That's so sad alie and you are justified to feel very angry at what has happened. Thank you for taking the time to think of others who may be at risk. (hugs)

So sorry to hear this latest news, Alie.

Warm ((hugs)) Alie thinking of you and your family at this sad time.

Dear Alie and [hugs]

Dear Alie, I am so very sorry for you and all the family. How hard life can be. My thoughts are with you all.

Alie, you know we are all here for you in this awful situation. You must be so angry. As Jess said, rare things are not researched properly as they don't have the same high profile as lots more 'common' conditions.

Oh, ^Alie* how very, very sad. Your anger is understandable, as is your grief. We are all thinking of you, and walking beside you. X

Alie I am so very sorry for your loss in such a tragic way. I hope there are people near you to give you the love and comforty ou need.

Alie I cannot find the words that would make any difference, such a tragedy for you and your family.
Your anger is natural and wholly understandable.
Pulmonary oedema is insidious and maybe she just didn't realise what was happening until too late.

My heart goes out to you and I'm very much thinking of you, ((hugs)) and love x

No wonder it came as such a shock to you.

I can understand your anger - you have lost a dearly loved daughter, and must be feeling that you wish she had had more information about the dangers of her condition. Let us hope that this information will be more widely disseminated to avoid further tragedies.

Thinking of you.

a

Alie I am so sorry to read this. Poor you

Very sorry to hear about this tragedy Allie and it's natural that you should be angry. Rare conditions are often not well researched or understood.
It can be very difficult when adult children are ill as I know - we so much want to support and protect them - to mother them in fact, but they do not always choose to keep their mum in the picture and sometimes they do not make the best choices about their treatment.

Alie, so very sorry, nothing I can say really. Just so sorry and my heart goes out to you.

I read your previous post about this condition and that DD was seriously ill. I can see why you feel anger.

I'm so sorry for the loss of your DD. I hope you have plenty of support at this sad time.

Oh Alie. There are no words.