PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing the dedication, gratitude, and optimism that defines us as a PWS community!
Our first Donor Spotlight of 2023 is Sujeiri Colon, who is mother to Shealynn (3) living with PWS, and a volunteer and supporter of our organization.
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When did you learn about Shealynn's PWS diagnosis?
Shealynn’s journey with PWS started at birth on New Years Eve. Right after she was born as the clock struck midnight, we received the news. Shealynn had to be transferred to a different hospital and admitted to the NICU. We had no answers, just that she wasn’t doing well and not feeding. Against everyone's advice, I decided the next day to sign out of the hospital I was to be by her side. It was days and nights in the NICU with no answers. After two months, we received the life-changing news: Shealynn Grace Williams has Prader-Willi syndrome.
My first question was, what is Prader-Willi syndrome? We then were told probably all the negatives possible, and until Shealynn bottle feeds her full bottle for a full week, she couldn’t go home. My husband Gregg and I cried and I ran out of the meeting room feeling alone, lost, and with no where to turn. At least that's what I thought. That night, I did all my research and requested PWSA | USA on Facebook. They immediately reached out and sent me information to better understand PWS and the healthcare that would be needed. The next day, I called a meeting with the NICU director, nurses, social worker, and genetics team and gave them the PWSA | USA information and booklets. That very day, we scheduled the Gtube surgery, and a week later came home. PWSA | USA also assigned me a mommy mentor, Noelle. She came to the NICU to visit and she was just amazing and so helpful. It was exactly what I needed during such a hard time. Someone who was there and would understand all the feelings and help answer questions that come with a diagnosis like PWS. I still turn to her with questions three years later. Without the help of PWSA | USA, none of this would have been possible. We would’ve been in the NICU believing we were the only people in the world going through this. I can’t thank PWSA | USA enough for all the help, support, and impact they’ve had in our lives.
Shealynn is now a three-year-old toddler who is growing and thriving. She tends to surprise me with her witty ways, just an overall amazing personality and little person filled with so much love to give.
What motivates you to donate to PWSA | USA?
I first learned about PWSA | USA via Facebook. They have a wonderful PWS community Facebook where many PWS families can communicate and share support and advice. That’s where PWSA | USA reached out to me within minutes to offer help.
My motivation to donate to PWSA | USA was due to the tremendous amount of help and support they gave my family and I in such a difficult and dark time in our lives. Also, all the support they gave the NICU staff. I can truly say that without their guidance, I don’t know where things would have gone or where we would be today.
Is there anything you’d like to share with other families, or any advice you would like to give?
What I would share with other PWS families is to remember that PWS doesn't define your entire life nor your loved one's. PWS is a small part of life and who your loved one is. Enjoy the now, the small moments, and the victories. Live in the now.
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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.