About Angelman Syndrome

The Green Girl and her niece, Jade, at the Los Angeles Angelman Syndrome National Walk Photo: Erin Laase
The Green Girl is a proud aunty to her 12 year old niece, Jade.

Jade is an active child. She loves playing at the park and going on rides at the amusement park. She enjoys going to school, doing homework and helping her Grandma with chores around the house.

Jade also has a genetic disorder, Angelman Syndrome. The condition is due to a lack of expression of the UBE3A gene on chromosome 15q.

Characteristic features of this condition include developmental delay, speech impairment, and problems with movement and balance (ataxia).epilepsy, ataxia, short attention span, hyperactivity, and sleep disturbance.

Angels have a happy demeanor and laugh easily. While Angels cannot speak, they do have much to say.

Many angels also suffer from epilepsy. The seizures can be debilitating and, in some cases, even fatal.

Picture Exchange Communication System (PECS) Communication Book Page
Jade is non-verbal but communicates using modified American Sign Language (ASL) signs and gestures, and by pointing to pictures in her Picture Exchange Communication System (PECS) Communication Book.

For more information about Angelman Syndrome, please visit the Angelman Syndrome Foundation website:

http://www.angelman.org

I am one of the organizers of the annual Los Angeles Angelman Syndrome National Walk. The event is held on the third Saturday in May at Shane's Inspiration Universally Accessible Park in Griffith Park.

This poem is dedicated to my angel, Jade.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.


© 1987, by Emily Perl Kingsley. All rights reserved.
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