About Jackson and Darcie

General Information About the Waicus Children and their AS Diagnosis:
Jackson was born on January 7, 2001 and was diagnosed at 2 years of age.  Darcie was born on May 19, 2003 and was diagnosed at 8 weeks old. 

The genetics of Angelman Syndrome (AS) are complicated.  There are four major genetic mechanisms that cause AS.  Jackson and Darcie have what is called a UBE3A mutation, which afflicts 10 - 15% of those with AS.  If it happens sporadically in the affected individual, the risk of recurrence is less than 1%.  However, as in our case, if the child's mother is a carrier of the UBE3A mutation (as Julie is) on her paternally inherited Chromosome 15, then the recurrence risk is known to be 50% with each pregnancy.  This is how our daughter Darcie became afflicted also.  We found that that Julie is a carrier when Jackson was 2 and she was 5 months pregnant with Darcie.  Theoretically, we had a 50% chance of Darcie having AS.

There are a over 1,000 individuals with AS in the United States registered with the national Angelman Syndrome Foundation (www.angelman.org).  Even more rare is that there are only about 20 or so families with multiple children afflicted, as we are.  Obviously, we are part of a very small group of people - it is still somewhat amazing to us to think about how rare our situation is.

Seizures:
Seizures are quite common with Angelman Syndrome and typically present by age 3.  Until around his third birthday, we did not think that Jackson had any seizure activity, and we considered ourselves very lucky.  However, we now know that he suffers from "drop" seizures, which occur randomly and last only a few seconds.  He is on medication to control them, as he falls when they happen and could potentially be injured.  Darcie was recently diagnosed with the same type of seizure activity and is now on medication as well to control them. 

What Does Having AS Mean for Jackson and Darcie?:
Our children will require long term therapy, ranging from speech, occupational, physical, and special instruction.  We began by mainstreaming Jackson in public school, but we learned after about a year that he needed more therapeutic services that they were unable to provide.  We decided to move him to a special education environment, and we chose to do the same for Darcie.  They both now attend The Larc School in Bellmawr, NJ (www.larcschool.org), where they receive daily therapy of various kinds.  The teachers, para-professionals, therapists, and administation at the Larc School are absolutely terrific and make it very enjoyable for the kids.  We are truly fortunate to have all of them in our lives.

They are learning to communicate through a variety of methods, including simple sign language, gestures, hand held talkers, computers, and hopefully one day, some words.  They are both really beginning to use their augmentative communication computer devices (their "talkers") effectively.  Their receptive ability is very strong, and they are very good at nodding their heads "yes" or shaking them "no" appropriately to answer questions.  They just cannot form the words to communicate.  Jackson and Darcie may not speak, but they have much to say. 


What are Their Activities and What do They Enjoy?:
Jackson and Darcie love riding the bus to school together - they hold hands walking into school when they arrive.  Jackson loves the outdoors and music - especially guitars!  They both love the beach and any water activities.  Both of them are very capable swimmers.  Jackson is involved with Special Olympics swimming, and when Darcie turns 8 she will be able to participate as well.  They are both naturals, just like Mommy and Daddy!  Darcie also loves to dance!  She has the ability to get people up onto a dance floor like nobody's business!  They also love jumping on their trampoline, playing on their swingset, walking around the neighborhood, outings to the mall, watching movies like The Grinch and Shrek, and roughhousing with Mom and Dad. 

Jackson began walking shortly after his third birthday, and Darcie began walking at 2 years of age.  Darcie is actually a very fast runner now and has learned to ride a bicycle with training wheels.  Jackson has an adaptive bike that allows him to pedal while Mom or Dad steer from behind.  They have a pure zest for life - one that we should all be lucky to have!