Contact Mary Tom comes home Tom in the PICU Tom in the NICU Tom's essential beginnings A nice spot for families of undiagnosed kids

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Welcome to the UDGD Spot!
My name is Mary Bouldin and one of my children has an undiagnosed genetic disorder.

As soon as I realized that I had a child with special needs I began to comb the web for information. I quickly ran into a problem. There are literally My sweet son Tom 1000's of genetic disorders known now and who knows how many will be discovered in the coming years? I found myself weeding through endless web pages looking for information.

Thomas Benlan - our genetic mystery.

The more common syndromes generally offered
a plethora of information via the www. As I researched more and more rare syndromes I found less total information, but I was still able to find a support group for each genetic syndrome
or disorder. The only spot I found no real resources for were children with undiagnosed genetic disorders and their loved ones. I found
this frustrating.

I have just opened a chat room at mIRC named #Undiagnosed_Disorders. For you advanced users, I am on irc.dal.net. This chat program is quite simple to use if you are not familiar with it - just click here to get started with a program that will allow you to chat very rapidly on a plethora of topics with people world-wide!

Children with undiagnosed genetic disorders may not have much in common as far as difficulties
and disorders may go; but their families and friends surely share much of the same confusion and frustrations as they wait to find a diagnosis that may never come.

This site is in the early stages of developement, so please bear with me if all of the pages do not look loveley.

I have just added a Bulletin Board to this site. Hopefully someone will wander in and leave a message there soon!

So what is the UDGD Spot about?
Undiagnosed genetic disorders in children.

Whom is this site for?
Families and caregivers of these kids may find this most useful, but everyone is welcome here.

So what's wrong with Tom? He has a bunch of little idiosyncracies - click here for information on Tom's medical condition.

I think the best place for me to start this site is with my sweet son Tom. Living with Tom has taught me a great deal, and loving Tom has helped me to share what our family has learned.
I must let you know - I have written a web site before (and continue to do so). My last site started as a silly hobby and grew into a monster over five years. I never knew where I was going, I just wandered into a website. This time - I know exactly what I want to do and where I am going. I just can't type fast enough to get me there today (who could? - I can see more than 100 pages in my future right now and my experience with web pages and writing in general tells me that it will only get bigger). The basics are all here - so please feel free to explore. Tom using a stander at 20 months I am adding info on a daily basis to this page (my first of many on this topic) so please stop by often. I am completely unsure if this will aid anyone - but I have hope. If this is of any interest to you I ask that you drop me a message by clicking here.