Hello everyone, please could you take a minute to read are e-mail as
we are new members.

Our names are lisa and colin, and we have a son of 14 months who has
nomid/cinca we live in the uk and are desperate to contact parents
who are in the same position. fynley our baby was only diagnosed 10
weeks ago and we have been struggling to come to terms with it,
first disbeif and confusion as to why! as i am sure you all have
been through, youselves. Now we are trying to be positive and find
the best possible route for fynley, with his quality of life and
illiminating the severe pain and suffering he goes through being the
most prioritised reasons. We have already spoke and are in contact
with Karon Durrant, seth's mummy and already she has helped us
immensly. Just being in touch with kind people who know what we are
going through and have expeirenced simular situations is reassuring
and comforting. As the world becomes a different place from the day
you get the diagnosis, we have felt like we are so alone.

Thanks to karon we have now contacted the NIH and spoke to both
scott and anna who are all quite happy to have fynley, in the nomid
project and the opportunity to get a full assessment of fyn's
symptons and a base line assessment on what presents.

He's daily medication now is voltarol every 8 hours, ranitidine
morning and night. prednisolone 10 mg a day, oral morph for the
chronic meningitus when needed and 250mls of paracetemol for the
temperature when needed. He has regular two week episodes and
although the medication has dampened down the rashes and joint pain,
still his head pain is very severe. He is not presenting any eye or
ear problems at the moment. and he does have a few days every
fortnight when he is well. He is a germ magnet and has also had
phneumonia, croup, rota virus, constant flu like symptons. He
rigors a lot when on an episode which last for a few days and has an
extremely high heart rate when this happens with heart beats of up
to 240 a minute, we are wondering if this sounds familar to any of
you? We are desperate to get him on the anakinra, but in this
country it seems he is to young. So we may be going to the NIH to
go on the project has anyone got children this young who are already
on it? can you let us know and how they are doing? and what country
do you come from, has anyone travelled from outside the USA to do
this? as we are thinking of doing.

We would love to here from you, please if you can E-mail us or
contact us in any way, our e-mail address is

Telephone 07766318189
E-mail Glastonbury_02@...

We wish you all well and take care form lisa and colin x