Hi Aisling

Good luck with your appointment in july, i really hope that prof woo can help jack, she has looked after charlie since he was very small less than age 1 and he is very good now (age 6 as he just had a birthday !! hooray) so Im very happy with how she has looked after him, between her and anne marie prieur in france (might not be spelt right) there really is no one else I can think off that can help us over here without visiting the NIH.

we are not back up there now until the beginning of sept but maybe one time our appt will coincide and we can meet jack. hope he gets better really soon

Karen xxx

--- On Tue, 7/8/08, aislingmcn <aislingmcn@...> wrote:

From: aislingmcn <aislingmcn@...>
Subject: [nomidsyndrome] Jack update
To: nomidsyndrome@yahoogroups.com
Date: Tuesday, July 8, 2008, 9:59 PM

Hi all,
Haven't been in contact for a while,Jack has been sick and in and out
of hospital.
He has had to go back on 5 mgs of prednesol as his symptoms were very
bad and the 25mgs of Anakinra wasn't really doing the job.He is on
2.5mgs per kilo.
We got our date at long last for GOS so can't wait to go...its for the
28th July,the day before Jack's 3rd birthday...
Anyway hope you're all keeping well,wish We could just pop over to The
NIH to join you all and get to meet you.
Maybe we will when he is a bit better....

Ciao for now
Aisling,Molly & Jack xxx