Written by Daniel's Sister
My brother, Daniel, was born in 1956, the same year that PWS was formally identified but he was not diagnosed until he was sixteen. Our family, (two parents, Daniel, and his four sisters) moved around a lot — from the U.S. to Chile, France, Canada and Venezuela—eventually settling in the Maryland suburbs of D.C. When he was eighteen, Daniel moved to live in the Camphill Village Kimberton Hills community in Pennsylvania. Years later, our parents decided to move Daniel closer to home to Baltimore, to a group home for PWS residents within the Chimes organization. After our parents passed away, my sisters and I moved Daniel even closer to us in Maryland. Currently, he lives in a rented apartment, is helped by caregivers, and attends a day/work program.
In April, 2020, when Daniel’s day program closed due to the pandemic, since he was designated “high risk” for Covid, he spent a year and a half living with one or another of his sisters. Despite the emotional strain on all of us, the time together allowed us to reminisce and to bond as adults. In addition, thanks to a careful diet and lots of walking, Daniel lost 40 pounds. Proud of his achievement, he still channels James Brown with, “I feel good!”
Daniel’s passion is sports. He follows baseball, basketball, and football. Unfortunately, all that yelling at the TV has not helped the Ravens or the Orioles, Daniel’s favorite teams. Still, he remains a loyal fan.
Besides sports, Daniel likes musicals, especially classics such as “West Side Story” and “Fiddler on the Roof.” During the early days of the pandemic, he might have set a number-of-times-watched record (from sunrise to sunset!) for those two musicals.
Recently, Daniel visited the National Aquarium in Baltimore. He was able to touch a jellyfish and see sharks up close, but his favorite part was watching the dolphins being trained.
In September of last year, Daniel celebrated his sixty-fifth birthday. He hosted an exercise-themed party at his day program and enjoyed dinner with family. Whenever anyone asks, “Who is your favorite sister?” Daniel’s answer is always the same. “All of them!”
Note: Over the years we’ve depended on the wonderful PWSA | USA organization and community for medical information and other resources. The conferences have been especially helpful as we continue to navigate this unique and difficult path. Thank you so much.
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