Saturday, October 27, 2012
Friday, May 13, 2011
While many great organizations work hard to feed the hungry, Prader-Willi Syndrome organizations are working hard to fund research in the hopes of finding treatments and... A CURE FOR HUNGER???
Too many children in the world will go to bed hungry tonight. But unlike those who are malnourished and lack access to food, children affected by Prader-Willi Syndrome (PWS) will go to bed hungry, no matter how much they eat. Their hunger never goes away... Ever!
May is National Prader-Willi Syndrome Awareness month.
Through awareness we find support... Through support we find answers... Through answers we find cures... And, like many other children around the world, my daughter Kirsten is “Hungry for a cure”. A cure for the hunger!
Prader-Willi Syndrome has an incidence rate of 1 in approximately 15,000 births. The result of a deletion in the 15th chromosome, the most prevalent issues associated with PWS are low muscle tone and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity... Or death!
Parents in the PWS community have to be strong enough to say no to a child who is always hungry and often crying because their tummy hurts. Parents in the PWS community also have to count calories, measure food portions, put padlocks on refrigerators & pantries and they worry about unsecured food or situations where food might be offered to their children by someone who doesn’t understand... Doesn’t understand that, yes, that little amount of candy will make a difference. And yes, our children are hungry... They are always hungry! Our children are fighting a relentless hunger that impairs judgement and puts them at risk, not only for weight gain, but death from stomach rupture.
I am one of the thousands of parents in the worldwide PWS community. My daughter Kirsten (7) has Prader-Willi Syndrome. Even with the many, many therapies, doctors visits, blood draws, medicines, twice daily injections, crying for food, tantrums and total meltdowns... Kirsten has hopes & dreams, imagination, creativity, a sense of humor and a smile that touches your heart.
Prader-Willi Syndrome is not who Kirsten is, it is what she has. Who she is and becomes is determined by the friends and family in our community and in her life.
For more information on Prader-Willi Syndrome and ways you can help raise awareness or donate, please go to www.pwsaillinois.org or email TerryLGuinn2@gmail.com