-now an Angel in heaven...

[Guest guest]

Hi everyone, this is going to be the most difficult e-mail I will ever write.

But I need to let everyone know that my sweet tiny baby has left us. She had

a " flu " for a few days with a high fever that we were able to lower w/

Tylenol, but then it would come back and so on. It began late Tuesday and by

Friday morning, her little heart couldn't take it anymore. She was having

trouble breathing and was very " purplish " and blotchy in the face and a few

of her fingertips had turned " purplish " . I called 911 and we got her to the

hospital where she stopped breathing. Then I was rushed out and didn't know a

thing until 45 min. later when the Dr. came in to tell us. I held her for 2

hours after. No one can even imagine the emptiness Mark and I feel right

now. We picked out her grave site today - that was so hard, but we picked a

beautiful spot under a pretty pink flowering tree. I will be " unsubscribing "

in a few days, however I will check my e-mail after the funeral which is on

Monday and then will sign off. I want to thank everyone on this list for

offering such wonderful support. And please take care of your little ones -

don't take them for granted because you never know when something as

meaningless as a flu can take them away from you. We still don't have a

diagnosis for Jes as to why she was as small as she was, though I believe I

will finish my last lead which is a geneticist on the LPA medical advisory

committe. He has agreed to look at her information and tell me what he

thinks, so we will see. Mark and I want EVERYONE to know " 's Story " ,

so someday soon, we will write a book about her so she can live forever in

everyones hearts. I'm beginning to ramble and I took a sleeping pill and it's

starting to kick in so I have to go now. Love to all of you and your " little

ones " - goodnight

, Mom to (2yr old angel), and big sis - who is having

a hard time coping, though she's not showing it yet - I'm being very careful