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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: No seizures in quite a while, but Liam's figured out how to turn door knobs: All doors now have eyehooks or slide-latches installed. Smart little bugger! :)
Update: Liam is now ten years old: He can walk with assistance, use a walker unassisted (though with supervision), turn on the kitchen sink, fill a cup and drink from it and generally make anyone around him happy :)
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 :(
Seizures are still rare and far apart (This is March, 2009 as I write this) - Knock on wood. Liam is doing well in school and recognizes a single PECS symbol (grapes)
Update: Liam is now thirteen years old (Today is his birthday, Sept 28, 2011) - No seizures in 2+ years (knock on wood) - He has transitioned to Fellowes High School, which has been amazing - Management there actually *gasp* care about the kids!!! PECS was a bust, he just ate the symbols :) Now working on finding the right medications to help the little guy sleep through the night.
Update: A month later (Nov 3, 2011) - We may just have found the combination, thanks to Whitewater Medical Centre: Quetiapine and Clonazapam. If you check out the Angelman Sydrome Sleep Survey Results, you'll see that the medications, variations and combinations vary widely.
Sometimes, the comment is made that people like Liam cost the tax payers an awful lot of money. This is nothing but the truth. He does. It is expensive to keep people with severe disabilities not only alive, but living in comfort and dignity.
However: Liam is a reminder of the social contract we, as citizens and taxpayers, have with each other.
To those who may question the money and resources spent on the severely handicapped, I suggest you think on this: All it takes is one car accident, one fall down the stairs, one mugging in a dark alley or any number of other, horrible instances - and you could be just like Liam.
Without that social contract- without reminders like Liam, who will wipe our bums when we cannot reach around ourselves? Who will feed us when we cannot hold a fork or spoon ? Who will change our clothes when we cannot lift our arms through the sleeve of a t-shirt ? Who will speak for us if our voices have been taken away ?
If you were the victim of tragic happenstance, or, like my son, the recipient of the genetic roll of the dice, would you want to be left in a dumpster or left on a curb to die because you were too expensive or too inconvenient to keep alive ?
Lest we forget, our citizens, our brave men and women fought and died for exactly this right: The right to life and dignity. If you think I am being dramatic, perhaps you should educate yourself on Action T4. Briefly (from Wikipedia):
Action T4 (German: Aktion T4) was a program, also called Euthanasia Program, in Nazi Germany spanning October 1939 until August 1941, during which physicians killed 70,273 people specified in Hitler's secret memo of September 1, 1939 as suffering patients "judged incurably sick, by critical medical examination", but described in a denunciation of the program by Cardinal Galen as long-term inmates of mental asylums "who may appear incurable".
| The great ANGELMAN SYNDROME SLEEP MEDICATION SURVEY|
What is Angelman Syndrome?
|Additional costs associated with children and young adults with Angelman Syndrome |
- Written as an aide for people going through a divorce where the non-custodial parent is suggesting that there are no "special costs" for children with Angelman Syndrome
|How has Angelman Syndrome Changed Liam's Life?|
|How do you test for Angelman Syndrome?|
|What can you do to make a difference?|
|The Giving and taking of authority – To authorities - When the local school overreaches its authority.|
|"Must be nice" to get all that "free" money! |
|Project AngelData: Survey Data ( - MS Excel format in a ZIP file)|
|Quest for respite services|
|Stupid Sayings by Stupid People Updated Aug 21, 2006|
|CASS Millenium Conference PICTURES (Year 2000) !!!|
|The Prisoner - a poem by an Angel Mom|
|You really want to know ? Some "truths" from a mother raising a child with a disability
|A Parent's Brochure For Parents- an Essay by an Angel Mom|
|The best news an angel parent could have :)|
|Ontario Disability Support Program Act, 1997( Amended, 2008)|
|Angelman Forum - A web forum for AS parents and caregivers, run by John Hannaford|
|Hipperbib - Hipperbibs - It's cool to drool. Really awesome bibs for our kids with a sense of style.|
|Stop Seizures Now: Point Sebago Resort in Casco, Maine Treats Disabled Children Horribly |
A sad, but true example of a very common, everyday form of discrimination our children face.
|"Marital stress in an Angelman Syndrome Family" - Article written by me, published in Angelman Today magazine, July/September, 2013.|
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