Josiane,

Professionally, I am a Police Officer for Baylor Health Care Systems located
in Dallas, TX. I have worked there for about 13 years now.

My wife and I are parents of three children. We have a daughter, Abrielle
age 12 , and two sons, Barak age 7 and Zechariah age 4. Both boys were born
with a rare genetic disorder currently known to affect fewer than 120 or so
boys in the world. They are both mentally and physically challenged, as well
as, both are nonverbal. They are much like happy downs kids. They love to
laugh and they are entertaining. *S*

When we first started learning about their disorder, we desired to be able to
talk with some of the other parents of children like ours. As it turns out,
we are all spread out all over the world. I ended up creating a web page for
the kids with this disorder and later a support eGroup so we could begin to
share more easily with one another.

Since then, I have started expanding what I had done for our disorder and
have now created the <A HREF="http://www.raredisorders.com">International
Rare Disease Support Network (IRDSN)</A> with over a 1000 different rare
disease support eGroups. We offer support for the people of every country in
the world and state wide support eGroups here in the U.S..

You may visit our community at:

<A HREF="http://www.raredisorders.com">http://www.raredisorders.com</A>

Please help us to spread the word about our existence. The group has grown
to more than a 1000 members and I hope to have close to 5000 by the end of
the year.

Any support you are able to offer would be greatly appreciated.

Please tell me how your daughter has been affected by her disorder. You will
find the affects of the disorder maybe common for kids of many different
diseases. It is these affects that we often times need help in managing.
Also please share a bit about yourself and your desire to help your child.

Welcome to our community and I hope you find the information and support you
are looking for in our network.

Please feel free to contact me at anytime.

Again, WELCOME

David Hughes, Founder/Owner
International Rare Disease Support Network (IRDSN)
1437 Cool Springs Dr.
Mesquite, TX 75181-4739
Telephone: (972) 222-9153
Voice/Fax: (972) 993-2021 x1397
Web page: <A HREF="http://www.raredisorders.com">www.raredisorders.com</A>
E-mail: <A HREF="mailto:irdsn@...">irdsn@...</A>