Contributed by Maria K., mother to George
It was a hot, sunny, typical Greek August day when George was born. He, along with his twin sister Nicole came into the world by C-section at 33 weeks. George was quiet, his tiny body floppy, and didn’t make a sound. I remember the alarmed faces in the delivery room. He was put immediately in neonatal intensive care. He stayed 1 month. Doctors buzzing in and out, conducting exams and bloodwork, trying to discover what was wrong with him.
One morning, I found myself in the hospital’s neurologist office. She looked at me and smiled. She uttered the magic words “if you were meant to have a child with a syndrome, believe me, you got the best syndrome of all. George has Prader-Willi syndrome.”
My world seemed to pause. My mind swirled with emotions – a mixture of relief for finally having an answer, concern for what lay ahead, and an unwavering determination to support my son with every fiber of my being.
The diagnosis was like a key that unlocked a door to a world of understanding. I immersed myself in research, connecting with support groups, and sought advice from experts in the field.
There were days that I was gloomy and sad and lost. I felt that George wasn’t given a fair chance like all the other “normal” kids. His twin sister, Nicole was reaching her milestones and Georgie was painfully behind. He was so persistent though, trying to imitate his twin sister’s every behavior. It was amazing to watch them interact. She was a little 2-year-old teacher and he was her eager student, gazing at her every move. George surpassed every obstacle, and exceeded my expectations, and then some. When he was five years old, I gave birth to my 3rd and 4th child and from then on his cup overflowed with love, support and encouragement. They were an invincible team of four! Together they embarked on adventures that nurtured George’s strengths and interests, while creating cherished memories as a family.
Over time, the diagnosis that had initially felt like a weight became a badge of honor – a testament to love, resilience, and unwavering dedication. We were all on a mission to show the world that every child, regardless of their challenges, has the capacity to shine brightly and inspire others.
As you noticed, this story is mostly positive. Don’t get me wrong, we had and still have the typical Prader-Willi negative situations, but my realization is that life’s most unexpected turns can lead to the most profound growth. I am a Transformational Coach with a niche in Parental Coaching, my son gave me the perfect hands-on opportunity to apply my knowledge of resilience, persistence, growth mindset, adapation, inclusive parenting and the skill to overcome adversity.
With an open heart, a willingness to learn, and a boundless well of love, we all transformed a diagnosis into an opportunity to make a difference and create a world where every child’s potential is embraced and celebrated.
There are some words of encouragement that even now, as adults, I still tell them:
“The sky is the limit my darlings. Just as the sun rises and sets, reminding us of the passage of time, we are each given a chance to rise and shine in our own way. We all have dreams, passions, and talents that make us who we are. And no matter what challenges we face, remember this: there is no boundary to what you can achieve, and even in the midst of darkness, there’s a light within us that can guide us towards our goals. It might take effort, patience, and a few stumbles along the way, but you have the power to reach for the stars!”
Thank you, George for this beautiful journey and for reminding us that nothing is impossible!
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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.