Living and Thriving with PWS – Love, Faith, and Future Grace
By Derek Montecalvo
One day, at the residential home in Barnstable where I was living, there was a commotion outside as staff and residents transitioned a new resident into his room. A beautiful young woman happened upon my doorstep during this transition. The moment we locked each other’s eyes, I had a feeling there was something there. I went with my gut – something I don’t generally do – and pulled her aside to talk privately. Low and behold, this was the same gal I had been talking online with for the past two years!
Leona and I started to have short and sweet visits with each other, but they weren’t a regular occurrence. In that time, we got to chatting and our connection grew as we learned more about each other and fell deeper in love. A staff member noticed our unique bond and decided it might be wise for us to start attending church together. I was hesitant because at this point, I had strayed far from the path on my walk with Christ, but Leona and I decided to give it a go together as partners. That same staff member introduced us to her church hoping we’d start going on a regular basis, and we did for a while.
That summer, I had the pleasure of visiting for the day at Leona’s parent’s campsite as they were visiting her for the summer. I was able to meet everyone in her immediate family, including her youngest sibling. That was a summer day I won’t ever forget! For the first time in a long while, I felt like I belonged and was loved. As I was dropped off after a long day, I was asked to make a promise that would change my life forever!
Upon learning the news that I’d be moving to Yarmouth, I wanted to find a church that I could consider home. My new housemate in Yarmouth invited me to explore the church he had been attending since his admission to Latham. Thus, my relationship with Grace Church and my spiritual revival was born! After becoming a regular, I took a class to be a legal member of the church body. By this point, I was having regular dates with Leona, but we still didn’t have our privacy. We got to talking about the church, and she asked me if she could join me on Sundays for morning worship. Stunned, I willingly obliged as having a partner come to church with me made it special. The summer of 2017, we decided to get baptized together at Cold Storage Beach in order to profess our relationship and love with God and Jesus, but also to ourselves as our statement of faith to each other.
Spring of 2020 marked 10 years since we began dating, and 2 of those 10 years was strictly a virtual relationship. I would have never imagined God bringing this new chapter to my life, but I couldn’t be more blessed and thankful for everything we now share! Although we do not know what our future holds, we are more than ready to reach it together. It’s hard for PWS individuals to find love, but it is possible! Leona and I are living proof of that, and we want to be a beacon of hope for others.
Today, I’m back taking college classes at Cape Cod Community College with about 52 accumulated college credits. I am a member of Phi Theta Kappa honor society and I have a GPA of 3.49.
Thank you for taking the time to read my story. I’m proud of my stripes and no longer afraid of my rare disease. We are not called warriors for no reason!
Pictured: Derek (30 years old) and his long-term girlfriend Leona (29 years old).
About the author: Derek Montecalvo is a college student with Prader-Willi syndrome (PWS). Derek has authored a series of blog posts about his journey with PWS and hopes to be a beacon of hope for others that love someone with PWS. Derek is proud of his stripes and no longer afraid of his rare disease and continues to not just live his life – but thrive – with PWS.
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.