Listserv Archives

These listserv archives are getting a little long in the tooth: Since they are such large files, I've zipped all of them up into a single zip file available here (2.9 megabytes).
The files in the archive are HTML files, viewable in any web browser.

Included in this archive are the following:

• Topomax Discussions
• Zonegran Discussions
• Depakote Discussions
• IEP Discussions
• Melatonin Discussions
• Seizure Discussions 1 of 5
• Seizure Discussions 2 of 5
• Seizure Discussions 3 of 5
• Seizure Discussions 4 of 5
• Seizure Discussions 5 of 5
• Communication Discussions
• Vagus Nerve Stimulator (VNS) Discussions
• Divorce Discussions

"Just because I can't talk doesn't mean I don't have anything to say"

In October of 1999, my son Liam-Jacques was diagnosed with Angelman Syndrome. This came after a first year of life filled with more struggle, pain and difficulty than any new-born should have to go through.

This site is here to do one of many small parts towards making the general public more aware of Angelman Syndrome in particular and genetic disorders in general. It is hoped that you will leave this site with a little more understanding of what Angelman Syndrome is and what you, a member of the global community, can help to do about it.

Update: Liam is sitting up on his own! All on his own, and with no help from the government at all (since the government has cancelled ALL of Liam's support, therapies and programs), Liam began sitting up all on his own! It took three and a half years, but he's doing it now!
Update: Liam CRAWLING!!!!! Only one month after learning how to sit up on his own, he just started crawling across the floor! WAY TO GO, BUDDY!!!
Update: Liam STANDING!!!!! Liam will now pull himself up to standing and, using very tiny steps - furniture cruise :) Woohoo!
Update: Liam In therapeutic horseback riding!!! Liam is enjoying this immensely and improvement to his balance and self-preservation reflexes are improving!
Update: Seizures are back, unfortunately. So far, like last year, they are short, lasting from 15 to 40 seconds and no medication so far (they are too infrequent and unpredictable for medicating, yet).

Here is a picture of Liam immediately after the seizure, asleep in his little room at the school.
Here is a picture of Liam at home, about two hours after the seizure - still a little zonked out.

Update: After almost a year with no seizures, they're back again: Four seizures in the space of two weeks. Knocking on wood that they go away again :(

The AngelSurvey is LIVE!!! If you are the parent or primary care giver of an Angel, please take a few minutes to contribute to the Angelman Syndrome parental knowledge-base by taking the survey here.