Dear Sherri, Jim and Family, and also Lisa, Fynley's
mom,

So good to hear from you all! I have been wanting to
write you for awhile, and I know I tried when you were
not getting the e-group messages. I am glad to hear
that Miranda is getting less prednisone, and is more
stable, but am sad to hear that her hearing is getting
worse, Have the hearing aids helped?

I met one family that their boy really suffered badly
from hearing loss, and have wondered if he could get
one of those cochlear ear implants to help the
hearing, or if it doesn't help in this case. He is
almost totally deaf now, at 16 years of age.

I am praying for Fynley, and all of these kids.
Please Lisa, let us know how your appointments went on
Friday with your doctors. I am so worried for Fynley,
and I know he is suffering so much in pain, it breaks
my heart. Also, we are praying for the people of
London and all of the UK right now, and hope things
will get better.

Seth and I are travelling tomorrow to the NIH, and Ana
told me there will be 6 NOMID patients there that
week! Wow, that is quite a lot! Some are adults with
NOMID too, so that should be interesting. Any who are
there, lets meet up and chat! We will be staying in
the Children's Inn, and have appointments from
Mon-Wednesday.

I am a bit nervous, as always, to have to be flying
during this increased alert for terrorists, and am
praying all will go well. It seems that every time we
have had to go, either there is a blizzard, or other
issues to contend with, but all goes well. At first,
we were all going to ttravel East on this trip, but we
changed plans, due to many reasons. Luckily we
decided not to bother, since the NIH recently re-did
our flights, and changed us to a different airline,
and airport, about 2 weeks ago! I would have been
going crazy if I had made flights for all of us
together on one airline, then had to change.

We will all travel out there another time. Sherri, I
wrote down your number and will call you sometime!

To Fynley's Family, we are hoping that you will soon
get what is needed for your son. You have had so many
struggles with the medical system, and it is so hard
to watch your child suffering, and know that there is
something available that can help him, and not be able
to get it.

Let us know if you are going to the NIH, and how your
fundraising is going for the flights. There may be a
way to get on online method set up to help collect
money. I know Amazon.com has a way to give money to
peole's charities, but you have to have a website.
There is also Paypal.

I have been trying to think of what can be done to set
up a charity for NOMID, and related disorders. I
think that it would be a great thing, and maybe be
used to help the costs for travel, and medications for
families in need with NOMID. I just do not know where
to start such a thing! Being that it is such a rare
disease, it is hard to get the recognition and
support. However, nothing is impossible! Between
NOMID, Familial Cold Uticaria and Muckle-Wells (all
syndromes related to defects on the cryopyrin protein
area), there is probably enought to get a little
something going.

I do wnoder how many more undiagnosed people are out
in the world, and also about those in 3rd world
countries, if they never get a chance to be diagnosed,
or worse. It makes you wonder, since Africa is such a
big continent, and China, Russia, etc. I wonder if
there are cases there too, and are not known yet.
Perhaps there are, and we just are not aware of them.

I have run across a site that is listing all the cases
of genetic disorders, by the gene mutation. I have
not looked at it in awhile, but from what I can tell
no one had reported Seth's mutation on it, or any
others. No names are given, but there are some
details for orgin of diagnosis, etc, that give enough
hints to guess where the person is from, and the
Doctors who diagnosed the person. I will have to look
at it again. Of course, only half of the NOMID?CINCA
peatients show the mutation, but I am sure that they
will fgind another source eventually as the cause.
Most likely, there is more than one gene, or location
in the DNA, that can cause this syndrome.

Best wishes to all, you are always in my thoughts and
prayers!

Karen Durrant

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