October
28, 2007 (Grand Island, NY)
This Halloween children from all around America will be celebrating with parties
and trick or treats. It is a holiday of candy. Jessika Dickinson (15) from Grand
Island, NY would love to be a part of a normal Halloween party or go out and
trick and treat with her friends but she cannot. Pictured on the left, Jessika
is all dolled up with her Cinderella costume for this year. One night of
candy could be deadly to her. Instead her parents, Tom and Jeannie Dickinson
bring Jessika to a party with others that have her syndrome. The family
celebrates with carrot and celery sticks along with a special treat, diet Cherry
Coke.
Jessika has Prader-Willi syndrome (PWS), a genetic disability that is not inherited but is caused by a deletion on chromosome 15, a part of her DNA. PWS is a complex syndrome that affects appetite, growth, metabolism, cognitive function, behavior and affects one in 12,000 to 15,000 births, including both males and females from all ethnic groups. It targets the hypothalamus, the central part of the brain. She feels hungry all the time, yet because of her low metabolism she is limited to only 800 calories a day!
Can you imagine being hungry all the time? And yet, not being able to eat only the equivalent of one meal in an entire day?
Many people with Prader-Willi syndrome have locked kitchens, cupboards and refrigerators. The drive for food is so strong that others need to protect the person from their own selves. It is similar to an addiction, but it is not something that can be controlled by willpower. It is part of their genetic being.
A night of Halloween candy eating could cause a stomach rupture because she would not know when she was full. If she did survive a binge, she would gain weight at an accelerated rate. In fact, one child gained 10 pounds in one weekend. Other life threatening conditions related to obesity can shorten her life such as diabetes and heart disease. One characteristic of PWS is low-muscle tone, which with excessive weight can weaken her heart.
Clint Hurdle, manager of the Colorado Rockies, has a daughter with Prader-Willi syndrome. During the World Series, Jessika, watches with special interest because she feels a connection to Madison Hurdle.
For more information about this life threatening disability, please call the Prader-Willi Association (USA) at 1 (800) 926-4797 or go to the web sight www.pwsausa.org.
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edited: 11/24/2007