Written by Daniel's Sister
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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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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.