A special contribution by guest blogger Teri Douglas
Teri shared her story via our Stories of Hope questionnaire.
When Jacob was diagnosed with Prader-Willi syndrome (PWS), his mom couldn’t have imagined the remarkable young man he would become. Today, Jacob continues to exceed every expectation.
He has graduated from high school and now attends the Easterseals day program. His mom beams with pride as she shares how far he’s come—not only in his accomplishments, but in the confidence and independence he’s developed along the way.
“Jacob is happy and healthy,” she says. “He’s 5’11” and 155 pounds. He manages his 1,500-calorie-a-day diet and his 45 minutes of daily exercise. He knows all about nutrition and what foods are good for him. He wants to work and loves researching on his computer. I know Jacob will be his own advocate when I’m not here to help him. When the right people are around to support him, Jacob is happy.”
Letting Jacob move into an individualized supported living (ISL) home at age 19 was one of the hardest things she’s ever done. “It killed me at first,” she admits. “I want to take care of Jacob forever—but I’m 60, and I know I won’t be here forever. This experience is preparing him to be able to survive on his own.”
Now, when Jacob comes home on the weekends, he proudly shows her how independent he’s become. “When he moved out two years ago, it was so hard to let him go,” she says. “But now I see that he’s thriving.”
Over the years, Jacob’s journey has taught his mom powerful lessons—about patience, perspective, and love. “Patience, patience, patience,” she laughs. “Don’t sweat the small stuff. His OCD quirks can drive me crazy, but then I realize—I just need to let it go.”
“I’ve fought the schools, the living arrangements, and the people who think they know PWS,” she says. “It’s a constant battle—but it’s worth it when your kid gets what they need to be successful.”
For parents who have just received a PWS diagnosis, her message is one of reassurance and hope: “They will be fine. They will be happy. Don’t worry about the small stuff. Be patient. Be calm. Be grateful.”
Jacob’s story is a powerful reminder that while the journey with PWS may have challenges, it’s also filled with joy, growth, and love—and that every step forward is a victory worth celebrating.
Do you have a story of hope to share with others about your experiences with PWS? Send it to us!
