Hi Jacie,
One question I have about your email is, why would you remain silent? This
is what we are all about, support. It helps to voice what you feel. If I or
anyone else can answer any questions, why wouldn't you ask? I would be more
than glad to answer any questions for you if I can. Without everyone here, I
wouldn't know as much as I do now. Please ask!! With this disease, we all
have to stick together!
I will tell you, the Childrens Inn is a wonderful place! And also, Janet
Jones is wonderful, and Dr. Goldbach Mansky is too! Everyone there that you
are going to meet is. I will tell you this, the first week is Extremely
busy!! Back to back appointments. But keep in mind, this is all worth it. It
seems to get a little crazy the first couple of days, but things just fall
into place. You won't be sorry. Audiology are especially good! Chris and his
wife just had a baby girl. But he came in that one day we were there and did
the test on Miranda under sedation. Great people.
If you need to talk or have questions, please don't hesitate to ask! My
number is 315-834-6187 if you need to call. I have unlimited long distance,
so if you want to call, then hang up, I will call you right back. I do that
with my family, then it doesn't cost anyone!
I hope this eases your mind, let me know how you do. We will just miss you,
we leave the NIH on the 29th or 30th!! So close....
Who knows, maybe we will meet each other, we would love to meet Erika.
Take care...
Lots of love to you all,
Sherri
----- Original Message -----
From: <JMDUCA@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Tuesday, April 06, 2004 3:40 AM
Subject: [nomidsyndrome] Is anyone receiivng my emails?


> Hi I am grandmother to Erika Lynn Perez. We will be going to the NIH
> (first time) May 1st. Ihave ben keeping up with your many emails and am
> so pleased to hear how this new medication is aiding your children,and
> now it is our turn to venture tio Maryland. We will be there for the
> first time May 1 st. I have tried to reach Camille by email but my mail
> as she is only 35 miles from where we live. But my mial is returned.
> It has been a greulling long and tedious wait. I am so thankful to hear
> about all the many children who have taken this trip and seeing the
> results of how this new drug is helping them and praying and hoping that
> it shall do the same for Erika.
> I have like a million questions (as I am sure that you all do) but shall
> remain slent and wait our turn. I keep you all in my prayers and
> thoughs. Hugs to all the chidren who go through such an ordeal and God
> bless the parents who stand by and wait hope and pray for a miracle.
> ~Jacie~
>
>
>
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