Being a sibling to an individual with Prader-Willi syndrome (PWS) is a remarkable experience. Almost all interviewed siblings agree 
that the positives of being a sibling to someone with PWS outweigh the negatives and are grateful to have the member with PWS in their family. Almost all the siblings we interviewed have an intense love for and a dear relationship with their sibling with PWS. Many siblings described it as their most special and precious relationship. 90% of interviewed siblings said they enjoyed being with their sibling with PWS. Many siblings reported feelings like, “It is impossible not to love her” and “she can always make me happier” (Murphy, Thornton & Thornton, 2019).
Personal Development
Most interviewed siblings reported that being a sibling to someone with PWS has taught them great skills and has aided in their personal development and growth.
Meaningful quotes by siblings:
- “It is all worth it.”
- “It is impossible not to love her.”
- “I feel that her happiness spreads to me.”
- Some of my times with her are the best times of my life.”
- “I’m thankful because he brings blessings and hardships.”
- “I am proud of how far she’s come even though it’s harder for her.”
- “I am grateful for what she adds to the family.”
- “I love him, and I care about him.”
- “I feel glad he is my brother. Even if he is different it is not in a bad way.”
- “It is cool to call him my brother.”
- “She means so much to me. You can’t connect in the same way as others.”
- “I enjoy being with her, I am super glad that she is part of the family.”
- “It is different from other families but totally worth it”.
- “I love experiencing the world through his eyes.”
- “I can’t imagine my life without him.”
- “I enjoy the super close relationship with her where you can see her humor.”
- “She is a perfect way for us as a family to get closer. She is the centerpiece of the family.”
- “99% of the time it is great.”
- “I love being her sister and wouldn’t trade it for the world.”
- “She is the one person who is so genuine, she means so much to me.”
- “You can’t connect [with her] in the same way as others, but you can’t connect with others in the same way as her.”
- “She is pure and innocent.”
- “The hard times are funny after the fact.”
- “I feel like she can just always make me happier.”
References
Murphy, L., Thornton, J., Thornton, E. (2019). Tips for Supporting Parents. Prader-Willi Syndrome Association (USA). Retrieved from: https://ww.pwsausa.org/2019conventionhandouts/
Contributed by Jane Thornton
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.