On May 24, 2007, our daughter Megan was diagnosed with Angelman Syndrome.

Angelman Syndrome (AS) is a rare, neuro-genetic disorder caused by a deletion of material on chromosome 15.  Until Meg's diagnosis, I had never heard of AS.  AS causes extreme physical and mental developmental delays.  As of now, November 12, 2007, Megan is 17 months old and still cannot sit up for more than a few seconds.  Megan occasionally says two words, mama and no.  Megan seems to understand basic commands and she has a tendency to be a little fussy.  She receives five hours of physical, occupational and stimulation therapy per week.  Megan will always require supervision.  Every kid is different, but the highest functioning AS people are developmentally equivalent to non-verbal 24 to 30 month olds.

It is difficult to have a special needs kid.  Meg has seizures (common in AS), digestive problems and a high tolerance for pain.  We often do not know she is ill until she runs a fever.  Meg is a frequent visitor to the ER.  We were in the ER Saturday because Megan had a half-hour long seizure.  It is very stressful living on a roller coaster.  I always try to do special things with Jimmy.  I have been told by almost every medical professional that someone is almost always neglected in families with special need children.

After six months, we are getting used to "a new kind of normal."  I do not want my family defined as the Angelman family.  We have a child with AS but that is only a part of what my family is.  My wife made a comment last week that I really liked.  She said, "We have one kid growing up too quickly and another one who is growing up too slowly."  Meg is very affectionate and loves to be around people.  She adores her older brother.

For more information about us, look around the site.  For more information about Angelman Syndrome, go to http://www.angelman.org/angel/ .