Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.
PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity and intellectual disability.
In recent years, the syndrome has been genetically characterized as an abnormality of chromosome 15, and definitive diagnosis is now based on genetic testing. [Taken from the Foundation for Prader-Willi Syndrome Website]
Sounds daunting and negative, however Lillian was born into a family of love, determination, and character. She has some of the best parents in Sarah and Phil, who love her more than you can imagine, and have dived in head first as they prepare Lillian for the journey of life that lies ahead.
I have never met Sarah, but have talked to her daily for about a year and a half. We met on a message board, and have still remained in contact. We share ups, downs, the in between, and have developed a rare type of friendship. I am grateful to have her, as well as the other ladies that are part of this community. I only wished we lived closer.
That is why some girls decided to run for Lillian, yet they run for her, her family, and all children who have this syndrome. In hopes for a cure, treatment, and that other children will not have to go through the struggles that these children will. Please donate what you can!
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