Dear Lisa and Everyone,

I am so glad to hear that the NIH will help you! I have been
thinking about you ever sice we last talked, and have not had the
time to write you or call until now. When are you going to go to
the NIH? We will be there July 10-15th, which is coming up fast.

Are they providing flights for you all for the trip? If there is a
problem with that, have Ana try to talk with the social workers
there to get you connected to one of the charity flight programs. I
think there are other families with more experience with this, but I
do know there are programs. This would be very good if you
need to bring the whole family!

As far as families traveling to the NIH from other countries, we
have met many, and I know there are 2 families from South
America in the NOMID study. I have never met those families
personally. For you all, it would not be too long of a flight,
probably less than it takes me to get there from San Francisco,
CA on the other side of America!

Hopefully you can have some medications to help Fynley be
comfortable on the flight. I would talk with the doctors about that
before going. Otherwise, if you arrive on any day but Saturday,
there are NIH free airport shuttle buses to pick you up at all the
airports, and take you to the NIH. They will get you a schedule
The main thing is that you get into the airport before the last
shuttles, which I think are around 6-7 p.m. It depends on the
airports, and it may be later than that, but not later than 7:30 p.m.

If you do not arrive on a day for shuttles or the right time, the NIH
can pre-authorize a taxi to pick you up at the airport, and take you
to the NIH. I prefer the shuttle, since the cab thing means a car
seat, (more to haul) and I have had all sorts of trouble with
coordinating the cab pick up. It all works out, but the shuttle is
much less stressful! I have also rode the Metro subway to the
NIH, and it can be done, but is for the adventurous ( or the
ignorant like I , that did not know that they would get me a cab for
a Saturday arrival!) The Metro is great once you are there, for
taking trips away from the NIH in you free time (sadly very little
down time, I warn you.)

There are ATM machines for money are everywhere, and even
at the NIH, so if you have a bank card that works in America, you
will be fine. If that is a problem, get American currency in the UK
before your trip, and bring it along. As far as bringing
medications home, which you will have a ton, the NIH can write
you a letter to put with the medications, vials and syringes, and
you take it as carry-on. I have always been very up front with
them at security, and surprisingly they do not seem to care! I
have had my bag searched for many things, but it has never
been over the medication stuff. Perhaps it is because I show the
letter, and am very open about it.

We did travel overseas, and have dealt with customs, etc. going
and coming. Again, it was not my medications that were the
issue, or vials and syringes, but they always had those cute
dogs sniffing at my collapsible soft ice cooler, since it smelled
like food ( and French cheeses, since we did a lot of picnicing on
our travels). They were very worried for any one to bring in any
meat, cheeses or produce from overseas, but whatever was in
my medications was not an issue! Thank goodness, since I
was very worried, and was calling customs places, etc before
the trip to make sure I would not get stopped or have them take
our precious Anakinra.

The most important thing is keeping the medication cold, and on
Ice for the trip, and any other travel. The NIH will provide a
styrofoam cooler for you, but it is bulky, so I now always bring a
fold up, soft fabric and plactic cooler bag thing, and it works
much better for me. They will give you ice packs, but for longer
jouneys, or flight delays, I bring extra plastic bags that seal shut,
or plastic containers, and ask for ice at the Mc Donalds inside
the airports, or anywhere. I have a new respect for Mc Donalds,
and other fast food chains that are everywhere, since they always
have ice, and this was a blessing in Europe, since outside
France, it is next to impossible to find ice!

We would have never been able to travel to see our family in
Europe if we did not have the Anakinra for Seth. Prior to him
going on the medicine, he was not in any condition for much
travel even in our home twon, many days! The Anakinra has
changed his life! He was still was needing to use a stroller for
that trip, at almost 5 years, due to his body issues with NOMID,
but now, he has not needed it for over 10 months. I do have to
carry him on longer hikes at times, and am thankful he is only 40
lbs when that occurs! Still, he was able to keep up at school,
and did well, except for being the germ magnet. He missed a lot
of school due to illness, and recurrent sinus infections, but that
should improve after he gets his tonsils and adenoids out this
August.

If anyone is thinking of taking any adventures, I did also buy very
cheap travel accident and cancellation coverage for all our family
through the AAA auto club in America. For around $33 each, I
got full coverage, even for pre-existing conditions, and
evacuation coverage, etc. I am happy to say we did not need it,
and Seth surprisingly stayed well for the entire trip ( a miracle).
You need to purchase it within a few days of booking you flights
to cover the pre-existing conditions.

Many times I thought, "Am I insane?", especially a few days
before our trip! I think all the cross-country trips to the NIH, and
all Seth endured for those appointments made me think that if
he can handle that, what is a few more hours on the plane. Plus
it was a vacation, not a stressful , busy trip involving tons of
blood tests, spinal taps, etc. We were also visiting with family
and friends for a good part of the trip, so it was not too stressful.
However, we did do a lot far from anyone we knew, and it was all
fine. I would love to do it again!

We have had to learn to live again, since with NOMID, life can be
very unpredictable, and scary, so you get a bit sheltered and
even a little paranoid at times. I worried about Seth starting
school last year too, but got over that as well. He has never had
issues or fear, which is amazing. I hope he can always have an
adventurous spirit, and not let NOMID hold him back ever again.

I would also like to thank Hervé ( a fellow in France that is an
adult with NOMID) for being an inspration to me and my family.
He told me how wonderful his mother was for him (she died last
year, which is so sad), and it has given me hope and motivation
to be the kind of person that will always try to open doors of
opportunity for our children, and let them be who they are, and
not let NOMID overshadow that. Merci beaucoup Hervé, et aussi
pour tu mère!

Thanks to all of you for your support as well, and I hope things
are going well for all. Hello Sherri too! I have had trouble with
getting messages too, but it is better now! I hope Miranda is
doing well. I hope to see the Griffins in July!

Best wishes to all,

Karen Durrant