General Chat

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 :-| :-|

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

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

Thank you Sally

Sending positive vibes.

Hope all is well.

love and hugs <3 <3 <3

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

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

Lizx

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

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

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!!!

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

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

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

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 little ZZ and all her family.
XX

Still thinking of little ZZ and all her family.

Hope there will be good news very soon.

Sallie.xx

My thoughts are with you and ALL the family.

Especially Little ZZ


Love and Hugs <3 <3 <3

Tess

Hope today might bring better news, Bridget

Little ZZ has been in my thoughts today


Lizxx

Thank you all for your messages and kind words. They are much appreciated.

I did not contact my sister yesterday and will not do so today, I am trying to give her a some breathing space and I know that if ZZ has to move again or worsens, she will let me know.

Thank you, hardly seems enough, to say to you all.....your continued interest and support is truly wonderful.

Hugs to you all.

Bridget who is trying to "look on the Bright side of life" :-) :-)

((((((((Hugs)))))))))) xx

Hello to you all

I had a chat with my sister earlier today and learned the following which I found interesting.

The father of ZZ comes from Pakistan and when his daughter was first found to have her condition terrible times occurred. The reason being that the Indian continent do not have this dreaded illness and the hospital in London were adamant that the child could not be his!!! you can imagine the chaos that made.??
Finally it was found that the part of Pakistan he comes from does in fact have this disease BUT itis rare and has "developed its' own way of working and that is why ZZ is not developing the same as most people in the UK with this condition.

I am not sure why I was not told this before. maybe because I was so unwell myself, but, better late than never.

Of course it does not change the fears etc but as you have all been so amazing in keeping ZZ in your mind I just thought I would share this with you.

Bye bye now until tomorrow, I hope you all have a pleasant evening.

Bridget
:-)