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Original poster

Can anyone fill me in on Noonan's syndome please

21 replies

Thomcat · 22/07/2004 11:55

Hi girls
My friend at work has just had it confirmed that her baby sister has Noonans syndrome. She's fine but her dad is understandably very uposet at the moment.

We've looked it up on the net and can see a few things about it, but I wanted to ask you all if you know anymore about or know anyone with noonans for a more human angle.

OP posts:
coppertop · 22/07/2004 12:05

I think Piffle's dd has Noonans doesn't she?

Original poster
Thomcat · 22/07/2004 12:13

Thanks CT - Piffle if you are there some words from you and lovely little girl would be a great comfort to my friend and her family right now.

I've done all I can do with my reassurances but a word or two from you and some information and advice, or anything would be wonderful and much appreciated. Thank you.

OP posts:
Original poster
Thomcat · 22/07/2004 12:22

Kiwibird - I've seen a post by you about your little girl as well. If there is any help you feel able to offer in terms of words of comfort, support etc they would be greatly appreciated.

OP posts:
coppertop · 22/07/2004 12:28

TC - Piffle is Kiwi's new name. All these name-changes are getting really confusing, aren't they?

hmb · 22/07/2004 12:36

I have just finished teaching a kid who has Noonans syndrome. His estimated grade for GCSE science is a B, so no effects of his mental ability that I could see. He was a great kid, keen to take part in things etc. No heart problems that I was aware of. He was slighly shorter than his peers, and will be having some surgery on his back this summer holiday. Other than that he was just a regular kid. He is hoping to take Biology for A level and I am looking forward to teaching him, if he does.

hth

Original poster
Thomcat · 22/07/2004 12:42

That's wonderful hmb, thank you.

Thanks for clearing that up CT. Hope Piffle sees this then.

Thanks girls, xx

OP posts:
Original poster
Thomcat · 22/07/2004 13:35

Are you around today Piffle?

OP posts:
bundle · 22/07/2004 13:39

here's something from a
bbc site on noonan's syndrome

Original poster
Thomcat · 22/07/2004 13:49

Thank you Bundle, that's very kind of you.

OP posts:
bundle · 22/07/2004 14:01

no probs, hope it helps

Original poster
Thomcat · 22/07/2004 16:46

That was a great site actually bundle, best one we've come accross so yes it really did help.

Would still be great to hear from you Piffle when you are next around and if you don't mind.

OP posts:
coppertop · 22/07/2004 20:15

bump!

Piffleoffagus · 22/07/2004 20:22

piffle is here!
Please TC email me and I can talk on phone
I know LOTS know as I have researched tons of stuff...
I can give you all the tips and places to call...

Piffleoffagus · 22/07/2004 20:24

ps thanks CT, nice timing for a bump....

Piffleoffagus · 22/07/2004 21:04

have emailed you Thomcat via CAT.... have always wanted to be able to do this with NS as I would have killed to have known anyone in that way for the human face of it.
xx Piff

Original poster
Thomcat · 22/07/2004 21:58

Oh Pif that means so much, thank you. Thank you, thank you, thank you.
I'm off work tomorrow, meeting up with a load of crazy mumsnetters! I'll be back around on Monday and with my friend so we'll email you then. Thanks for being there.

And Coppertop, thanks for helping so much with the instant reply, the introduction and the bumping.

I really don't know how the rest of the worl get by without mumsnet! As soon as she told me I came straight on mumsnet. Thanks again girls.

OP posts:
coppertop · 22/07/2004 22:01

All part of the coppertop service!

Piffleoffagus · 22/07/2004 22:31

You are so welcome, esp you Tc after all the ups and downs and wondeful things you give us all here

Original poster
Thomcat · 22/07/2004 23:23

Ahh Piff, what a really nice thing to say, thanks mate, that made me feel really good then
Well I look forward to speaking with you more on Monday when i can relay your words over to my friend then and there.
Thanks again.

OP posts:
Piffleoffagus · 23/07/2004 11:10

Cool will get some phone numbers and web addresses ready in prep!
Enjoy your mad day out TC!!!

Original poster
Thomcat · 26/07/2004 09:55

Morning Piff, got your email thanks. My friend isn't in today so might be tomorrow that we get in touch. TC x

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