About
Julianna was born in 2005. She had a multitude of issues that are now recognized as symptoms of PWS. It was 10 months before she was diagnosed. She has had several surgeries as well as various therapies including injection of Human Growth Hormone. (HGH)
Julianna's Wish was started in early 2007. We are a non-profit organization.
Prader-Willi Syndrome (PWS) is a rare genetic disorder that affects one in 12,000 to 15,000 births. This syndrome affects both males and females and all ethic groups and is primarily characterized by chronic hunger, which can lead to excessive eating and life-threatening obesity. An insatiable appetite that they cannot learn to control because of a dysfunction of the hypothalamus region in the brain.
Prader-Willi Syndrome is characterized by:
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Cognitive issues
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Short Stature
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Decreased Muscle Tone
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Mood Swings
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Chronic hunger which can lead to excessive eating and life-threatening obesity.
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Rapid weight gain on just a few calories due to a malfunctioning metabolic system. A closely monitored diet must be maintained to restrict calorie intake
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Babies typically show no interest in eating and have difficulty sucking, breathing and swallowing. This is known as the "failure to thrive" stage.
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Children as young as three have died of weight related problems. these problems are life threatening and include perforation of the lining in the stomach from sudden eating binges.
PWS often goes misdiagnosed. Currently, there is no cure and no medication or procedures are successful in staving off the relentless hunger.