As told by her mom Lauren
When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation.
PWSA | USA sent us a packet of information that helped not only educate us, but educate the hospital where Brooklyn was. The NICU where Brooklyn was only had one other child in the past 15 years who had been diagnosed with Prader-Willi Syndrome. Their information made the doctors listen and learn.
PWSA | USA put me in contact with a parent mentor. So I didn’t feel wrong or like a bad mom for feeling what I was feeling. We will forever be grateful for the services they provided. Without them I don’t know where we would be. They were my lifeline when I felt like I was drowning.
Our daughter is such a happy, sassy, loving, wonderful little angel. We are so lucky to have her.
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.