General Chat

Still thinking of little ZZ and all her family.

Hope there will be good news very soon.

Sallie.xx

Thinking of little ZZ and all her family.
XX

Good morning to you all and thanks to Barbara and Liz for your messages.
Liz, you are quite right about a cure, there are people working so hard on this project. This is why my niece works very hard to support those doing the research.
As a group you are a fantastic support to me and then through me to the family.
I will not be calling my sister today, I know that if there is any change she will let me know.

So, have a peaceful and happy day with your family and friends for I believe that these people make us who we are.

It is grey and damp here today, but not in my heart,

Bridget :-)

Thinking of ZZ and her family, hope that fighting spirit stays with her and she can rally against the weight loss.

One day these awful illnesses might be eradicated and all that the doctors learn from ZZ as they try to help her will be going towards helping other children too, altho that's no consolation to her loved ones who are so worried about her.

Bless her, I am glad she still shows sparks of her strong spirit


Lizxx

Hello Bridget just seen your post .come on little ZZ we are sending love & Big ((((((hugs))))) for you & your family Barbra xx <3

Anne
So true!
At least my niece is involved in helping the Cystic Fibrosis Research programme and so far has raised about 70.000 for it.
A do so admire her?

Items already planned for next year....

Of course we all contribute whenever we can.

Thanks for staying with us.

Bridget

Will remain thinking of the poor little mite. Yes, a miracle cure would be wonderful. But progress in these things is being made all the time so we can but hope!!!

Just received an email from my sister

ZZ remains in hospital. She is being fed during the night through tubes but will not eat anything offered to her during the day. This means that she also has to be fed through the tube. The family have been told that the Doctor from Bristol is aware and will visit her again on Thursday and she may have to return to Bristol. They are also being supported by all the staff but .........
My sister said that ZZ is so thin that she now looks almost skeletal. As you can imagine she is very lethargic at times but still shows sparks of her old self. She is fighting very hard to remain with us.

There is little else that I can say.....you have been with me all the way, and you are a great solace to us all.

Wouldn't it be a miracle if one day a cure or a way to remove this gene which causes such heartbreak to so many was found. .?

Bless you all

Bridget

Thank you once more for all your kind thoughts and genuine interest. No news from my sister all day yesterday or by email this morning. I will send a message in a few minutes and in an hour or two I will call her if I have not had a reply.
Bridget

Hope things are going well for ZZ and her family, and she is managing to eat more and build up her strength

Lizx

Hoping all is well for little ZZ and family.
xx <3

Sending positive vibes.

Hope all is well.

love and hugs <3 <3 <3

No news yet and no reply from my two Telephone calls
Now do I assume that all is well or,,,,,,,,,,,

Thank you Sally

Bridget hoping that no news is good news..... will look in later to see if there is any.
Thinking about little ZZ and the family.


Love, Sallie.x

Thank you everyone for your kind thoughts and messages. I have tried to speak to my sister today but no reply, even my husband has left a message but still no reply...I hope that all is well and as soon as i speak to or hear from her i will be back.

Bridget :-| :-|

Wow - Baked Beans in the night - that takes me back - glad ZZ is eating again - Baked Beans will put some weight back on (speaking as a vegetarian) - Keep Faith Bridget (I know it's hard - there is a reason for everything in this world)
<3
Gerard

Well it doesn't matter what time she eats as long as she is taking nourishment and I hope she manages to continue to eat and will put some weight back on and keep fighting. She is certainly a little character and seems to say Don't write me off yet! Another memory for the family, midnight feast of baked beans.


Lizx

Hadn't been on the boards for a couple of days, so only just seen that Little ZZ has been rushed back into hospital.

So sorry to hear that she had lost so much weight.
But eating baked beans in the night sounds like a midnight-feast!
The girl still knows how to party!!!

I don't really understand about Guardian Angels, but am comforted by the thought of them.

I think of a wonderful friend of mine who died a few years ago, Ivy, as The Angel on my Shoulder.

She looked after me in life, and I reckon that she still looks after (or out for ) me now.

Take care everyone,

love and hugs <3 <3 <3

Tess

As you said, it's a lot of weight for her to lose, Let's hope that she will now be able to eat a bit more and hopefully regain the weight.

Lots of hugs and positive thoughts to little ZZ.

Also thinking of all the family.


Sallie.xx

Sorry I didn't catch this yeaterday. So sorry little one is back in hospital. But maybe it is a good sign that she ate some baked beans, lots of goodness in them. That is a lot of weight to lose so i hope she manages to put some on fairly quickly. Holding her in my thoughts.