Dear All,

We haven't been in touch for a long time, although we do read the e-mails about
what is happening to the children.

Molly is now aged 8 years, and a year ago commenced daily injections of
Anakinra. The effect was like a miracle. Only hours after the first injection
her rash disappeared; she no longer has conjunctivitis, or pains in her stomach,
head and joints, and she feels better in herself. All her blood tests are back
to normal. This drug isn't licenced in Gt. Britain for children; we're not sure
about the U.S.A.

Many of you will recognise our uphill struggle, at every step, to get to this
stage. Through the internet, we ourselves eventually located a doctor in London.
We had to persuade our consultant to refer us to him. We had not heard of
CINCA/NOMID, but simply by looking at Molly -by then 2 years of age- he
suggested it as a possible diagnosis. He told us about genetic testing being
done in France, unavailable in Britain at that time. Again we had to take the
initiative in obtaining a referral, and a further five years passed before we
could start the Anakinra.

We won't try to explain how thankful we are that research brought this drug
forward when we needed it.

We hope that you take heart and hope from our experiences.


Evie and David