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Our niece Emerson was diagnosed at infancy with Prader-Willi Syndrome (PWS). With your help, we would like to raise $10,000 for PWSA. http://www.firstgiving.com/fundraiser/olivaeatery/prader-willisyndromeassociationusa
Prader-Willi Syndrome is a complex syndrome affecting appetite, growth, metabolism, cognitive function, and behavior. The hallmark characteristics of PWS that typically begin around age three to five include:
· An insatiable appetite that cannot learn to be controlled because of a dysfunction of the hypothalamus region in the brain.
· Rapid weight gain on few calories because of a malfunctioning metabolic system. Therefore a closely monitored diet must be a maintained to restrict calorie intake.
· Ironically, babies typically show no interest in eating and have difficulty sucking, breathing and swallowing. This is known as “failure to thrive” stage.
· Those with PWS need strict external controls, including access to food. Possibly to the extent of padlocking food. This may be necessary as a life-saving intervention. Children as young as three have died of weight related problems. These problems are life threatening and include perforation in the lining in the stomach from sudden eating binges.
It is estimated that PWS affects one in 12,000 to 15,000 births. This syndrome affects both males and females and all ethic groups. Currently there is no cure to date, no medications or procedures are successful in staving off the relentless hunger. However, growth hormone has been effective in increasing height, improving body mass and metabolism, and boosting strength and energy.
Emerson is a very sweet girl with an incredibly infectious smile! We are fortunate for an early diagnosis, along with a handful of specialists and daily therapies. The biggest factor in our success has been the growth hormone therapy, a daily injection that she will need for the rest of her life. Although we are not experiencing the food seeking issues at this time, we know that the road ahead will be challenging for her as the second phase of this syndrome emerges.
Please help us in our efforts to activate PWS knowledge & to enlighten others about this syndrome. To learn more about PWS visit the website of PWSA (USA) at: www.pwsausa.org
Thank you for support,