Re: Welcome, Keely

[Guest guest]

Hi n,

Thanks for your message. I'm sure there are others out there with A1AT

deficiency that don't even know it. It came as a complete surprise to us, and

we never would have known if Leila hadn't had a liver problem. You're right

about there being much to learn. We still feel very overwhelmed by it all.

Every time the baby makes a little sound or coughs at all I wonder if she's o.k.

I keep wondering when she's going to look or act sick. One of our docs said

we'll see it when she gets her first cold. You must have tremendous knowledge

having lived it and raised one too! Your presence gives me hope that my

daughter may too have longevity.

Best Wishes,

Keeley

Welcome, Keely

Quite a large percentage of us with cystic fibrosis do have alph-1

-antitrypsin deficiency; I do not, but I have friends who do. Your daugh

ter sounds to have had really good care--must have a really good fa

mily, too. There is so much to learn, and we all learn some of it in dif

ferent ways. Sometimes I think of our list, which is terrific, as " confuse-

a-parent because we have so many who are learning and sharing so

much that it hits the parents of newly diagnosed kids with a real bang.

But we try really hard here to be supportive, informative and sharing,

caring and even sometimes, humorous. Our list is as good as it is be

cause so many wonderful people like you and your family find us.

Thank you so much for diving right in.

Love to you and to yours,

n Rojas, wcf, mom of 3 adults, youngest with cystic fibrosis, too;

I am widowed, NOT due to cystic fibrosis; the " kids " are grown and

are now 41, 39 and 36, wcf. We won't even discuss my age except

that it is not yet three digits