Dear Karen,

I am glad that Kate called you, she is an amazing and
very supportive person! It is too bad that the site
is down, I guess it is good that it is getting the
attention, but too bad the server is being fussy.

For now, read the achived stuff on the e-group, and
you will get a lot of good info and help. That is
what I did at first, in addition to the great NOMID
site John and Kate run.

I am Karen Durrant, and my son, Seth has NOMID. I
have posted a bunch, so you will find me in the
e-group archives as well.



Dear Kate,

I am still thinking about a NOMID non-profit, but have
put it on hold until after October. Lots going on,and
I am starting up some part-time work doing flu shots
(I'm and RN) for the flu season.

I have a photo of Seth with Alex and Abby I need to
send for your site, and some other info.

Seth is doing very well now, and the surgery to remove
his tonsils and adenoids has really helped him. He
has, of course, had 2 colds already since school
started, but they have not held him back like before,
since he can clear his sinuses well. Hooray! Is Alex
doing better?

On another note, Seth is going to be in the world
premiere San Francisco opera, Dr. Atomic!
(non-singing part) Long story, but he got cast as the
role of the young Peter Oppenheimer, son of Robert
Oppenheimer. We have been at some final rehearsals on
evenings this week, so that is an added new adventure
in our life! Our older son sings with the SF Boys
Chorus, and we got the audition call through them.
Seth is having a great time, and it is an amazing
experience that he never would have dreamed he would
have, if it were not for the Anakinra and the NIH.

If anyone wants more info, go to www.sfopera.com The
opera is about the families and issues behind the
scenes in the making of the atomic bomb in the 40's.
The music is very beautiful, and moving, and has
given me a new insight into this whole thing, and the
personal toll it took on the people involved. I
guess it is quite the big topic in the opera world,
and the world premiere will be October 1st! Seth has
a small role, but he is having fun.

I have not really discussed Seth's life with NOMID,
since he is now quite stable, and it is nice for Seth
to be doing something different. At school he is
known for being "the kid with the food allergies" or
other health stuff. We try to keep that not a main
topic in his life, but you cannot avoid the allergy
topic in schools! We are not trying to be secretive
or anything, but as you all know, people look at your
child differently!

As you may guess, Seth is feeling quite good now, and
he does have an understudy in case he does get ill
(lets hope not, but the other boy would be glad for
more stage time!).

Otherwise, life is good, and it is fun to be doing
something new. Seth has really gotten into being on
stage, and loves it so far, and that is so nice.
Drama is a good thing, and somethinghe will be able to
do in life, versus intense sports, etc.


Have a great week,

Karen Durrant




--- nomidsyndrome@yahoogroups.com wrote:

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> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Thank-you to Kate
> From: "underwhelemed"
> <karenatkinson@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Mon, 19 Sep 2005 21:37:10 -0000
> From: "underwhelemed" <karenatkinson@...>
> Subject: Thank-you to Kate
>
> Hello to all,
>
> I write to thank Kate for her time lastnight. I am
> in process of
> revieving this diagnosis for my 19 month onl son and
> have been a
> complete basket case lately. I went to the site
> that Kate and Jogn
> have but I could not access it so I sent an e-mail,
> to my complete
> amazment Kate called my just hours later. I was so
> surprised that
> anyone could be so kind to a complete stranger!
> While I'd like to
> write more I am just on the run and promise I will
> put more
> information shortly.
>
> Kate, thank-you! the fear, isolation, lack of
> knowledge is
> paralyzing me. It is only too sad that the support,
> and more
> importantly information, I have recieved has been
> through you and
> not the medical professionals who are supposed to
> care for him.
> (Don't get me started, but that is another story!)
> So I look
> forward to getting to know you and your children.
>
> Kind regards,
> Karen
>
>
>
>
>
>
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