Dear Everyone,

I hope that you all are enjoying summer! I also hope that all the
children are doing well, and that Miranda and Alex are feeling better.I
have not writen in awhile due to computer problems and vacations.

Has anyone heard any new information on the protocol, or have any other
families made the trip to the NIH? I do hope that the medicine
protocol starts soon, and that it truly works, since so many of our
children need a miracle soon! Seth has been doing better lately (and
we were able to travel to see family with only a few rough days). He
took a long time after the NIH to get back up to speed again. I do not
know if it was due to the stress of testing, travel, etc (and the large
quantity of blood for testing at the NIH) but he seemed to be more
exhausted for weeks afterwards, and caught a few colds and flu, etc. He
is on iron supplements, due to anemia issues, but not as severe as
Alice has had this year. I hope she is improving as well.

I wondered if Alice has taken any medicines like Procrit, or anything
to boost the production in blood cell. I am sure they have done
everything, I just wish there could be something to help.

I am still in contact with Herve, the fello with NOMID in France. He
is trying some new medications there, and the doctors are hopeful for a
vaccine to help this syndrome in a few years. He did not have all the
details on that research going on over there. I do not know if they
were referring to the same medicine that the NIH wants to use, which is
an injection, or something else, but it is interesting to hear what
others are doing to fight the affects of this syndrome.

I have been thinking a lot about you all, even though I have not met
many of you (except Belinda and her family, which was great! I hope you
all are doing well too!) I have kept you all in our thoughts and
prayers, and hope that the doctors have found something to help Alex,
because he sure deserves it! Have you tried the new medicine?

I sure hope that you all have good news to share, but if not, please
share with us how you all are doing. Thanks to all in this e-group,
and have a great summer! If anyone else in other countries has any new
info or studies that they are doing elsewhere, we are all interested in
what you are doing as well.

I am hoping that soon we will hear about new miracle cures and
breakthroughs for everyone.

Do any of your children have orthotics, or shoe inserts to help balance
the muscles, or fix flat feet, or pronating feet, etc.? Seth has some
for flat and pronating feet, and imbalanced knee muscles, and we are
looking into some other typesof shoe inserts, etc. to help him. ( His
brother has similar foot problems, but less severe, This is strange,
since he doesn't have NOMID, and no one else in our family has these
foot problems.) If anyone has good information, we would appreciate it!
The podiatrist we have seen recently was not very helpful, and I may
seek out some other specialists. Before I do, I need to educate myself
better on this topic, since getting another opinion may be completely
out of my pocket, since the guy we saw was on our insurance program!

Thanks again and best wishes to all!

Karen Durrant