Wednesday, May 15, 2013

Trisomy 18 is not a death sentence. The story of Lilliana Dennis - updated.

By Alex Schadenberg
Executive Director of the Euthanasia Prevention Coalition

On May 29, 2012, I wrote an article about Lilliana Dennis, a child who has a genetic anomaly known as Trisomy 18 or Edwards syndrome

Most children with Trisomy 18 are screened in the womb and not born, and if they are born, they are often denied medical treatment under an ideology that defines them as "incompatible with life."

Last year, Barb Farlow sent me the story of Lilliana Dennis that included a Youtube video of Lilliana's first birthday.

The story and the youtube video moved me to write the article: Trisomy 18 is not a death sentence: The story of Lilliana Dennis.

The article received a huge response with many websites and blogs republishing it. 

Brad Mattes who hosts the program Facing Life Head-ON read the article and contacted the Dennis family asking them if he could feature Lilliana in an upcoming episode of his show. Episode 11 titled: Hope for Lilliana told the amazing story of Lilliana through interviews and pictures.


Over the past year I have received weekly updates from the Dennis family and recently I noticed that Lilliana received hearing aides. 

The recent update included a 3 minute youtube video showing Lilliana reacting as she notices that she can clearly hear.

This update also featured the work of the Jackson Center. The Dennis family stated:
Lilliana at Easter Party
"we are asking for your help to raise money through Walking for Dreams. This is an annual family and pet walk that benefits both the Jackson Center and our family. The money raised by our team will split on a percentage basis with a portion being credited directly toward Lilliana's tuition and the remainder being used to help defray Jackson Center operating expenses. Conductive education is a program that helps children and adults with motor disorders develop motor skills through repetition, peer interaction and positive reinforcement. The goal of conductive education is to help each participant achieve the highest quality of independent life. The Jackson Center is the only conductive education program in Indiana. To learn more about the Jackson Center visit the Jackson Center. Since Lilliana began attending the Jackson Center, she has increased her overall core strength and developed her hand-eye coordination. And too date, she eats oral food the best while at the Jackson Center. We are interested in doing everything we can to ensure that conductive education is available in central Indiana and have set a goal to raise $3,500 for Lilliana and the Jackson Center through Walking for Dreams. If you are willing to help, you can make a donation on-line by visiting www.walkingfordreams.org."
Lilliana at a restaurant
My primary concern is how euthanasia changes attitudes toward people with disabilities, especially children like Lilliana who are often defined as "incompatible with life." 

In the Netherlands, where euthanasia is legal, children like Lilliana are euthanized at birth under the terms of the Groningen Protocol.

Currently, the Belgium government is talking about extending euthanasia to children with disabilities, like Lilliana. 

In many countries, including Canada, children like Lilliana are simply not given a chance to live based on the attitudes that either view the lives of Trisomy 18 children as not worth living or that they are too expensive to care for.

When seeing the story of Lilliana Dennis we recognize that life comes in many different shapes, sizes and health conditions. That everyone deserves to be treated with equality and given a chance to live.

Society needs to learn that Trisomy 18 is not a death sentence.

Video's of Lilliana:
* Lilliana turns 2. May 17, 2013.
* Lilliana hears for the first time. May 7, 2013.
* Trisomy 13 and 18 March Awareness.
Lilliana talking, smiling and twirling, 20 months old.
* Facing Life Head-on: Season six, episode 11: Hope for Lilliana.

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