PWS Blog

Scott's Success Story

Posted: May 11, 2017 by The Children's Institute


When Scott Lee hit bottom, he hit it hard.

Five-foot-two and 568 pounds, the patient with Prader-Willi syndrome was wheelchair-bound and hopeless after losing his job in October 2013.

“I couldn’t get around and that’s when I kind of took a nose-dive,” said Scottie, now 35. “From that point forward, it was a downward spiral. I basically started to eat myself to death.”

He entered rehab facilities but nothing worked.

“The Prader-Willi part was never addressed and that was a problem,” Scottie said. “Within six weeks of leaving, everything would be back to where it was. The 60 pounds I lost would come back.”

Enter The Children’s Institute’s Prader-Willi Center of Excellence. Scott Lee came to us in March 2016 and left five months later a different man.



“It was a life-saving opportunity. It truly was a life-saving opportunity. It made me aware that Prader-Willi syndrome is not just a food issue. It’s about everything I do,” Scottie told me. “I came back with so many tools and understanding. It prepared me for a life-change. I literally was broken. But coming to The Children’s Institute gave me a sense of myself. I learned about myself and my identity.”

Today, Scott, a college graduate, lives independently in York, Pa. with his wife of five years, Monica –unusual details for a syndrome where most, even in adulthood, are forced to live under close supervision in caretakers’ homes. He’s down to 349 lbs, and exercises regularly, taking pleasure in regular walks and swimming.

“I have – I don’t want to say a strict exercise regimen, but it’s there and that’s something that I’ve never had,” he said. “It’s kind of nice to go to doctors’ appointment and they ask, ‘Do you exercise regularly?’ and I say, “YES!’”
Scott was diagnosed with Prader-Willi syndrome at age 17, after his childhood pet died. He realized quickly that he overate because, in part, he had issues with loss. But his appetite also was genetically coded in his DNA.

“Doesn’t matter what time it is, I’m always hungry,” he said. “There are still the urges. When I’m alone, more things happen. So I have to remind myself, ‘I can’t be left alone.’”
That’s a tall order for Monica, his wife, who, Scottie says, “deserves so much more than I give her.”

“People with Prader-Willi can be ego-centric and I do side with it because I’m hard-wired that way. But the other side of my brain and my heart say, ‘There’s another person in this house; it’s not all about you,’” Scottie said. “At the end of the day, it’s about trying to put her needs ahead of mine. That’s another thing I’ve been working on.”

Recently, Scott gained some weight but he says he’s not letting his life take the path it did five years ago.

“I’m working my butt off to lose the weight,” he told me. “I’m not going back to where I was – that’s not happening.”


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