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 next November Donor Spotlight is Michelle Spring, who recently held a fundraiser, Answers for Audrey, in support of PWSA | USA and in honor of her daughter Audrey who is living with PWS.
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When did you learn about Audrey's PWS diagnosis?
Audrey was delivered at St. Luke's hospital in Chesterfield, MO via C-Section on 12/12/20. We were shocked she was a girl, we kept gender a surprise until birth! We soon realized something wasn't right, she didn't cry when she was born. She slept almost all the time, she didn't respond to touch, and she would not eat.
On 12/15/20 we decided to have her transferred by ambulance to a larger hospital, Mercy's NICU where we'd undergo all types of tests. We were in the NICU without answers for 18 days and every day Audrey was making improvements like staying awake longer, gaining more control over eye movements and increased muscle tone. We decided to have a G tube placed on 12/24 to aid Audrey's feedings and so we could work towards going home. On 12/29, two hours before discharge we were given Audrey's diagnosis: Prader Willi Syndrome (PWS).
How did you learn about PWSA | USA?
When we first received the diagnosis we were devastated. Our extended families were devastated. I hated telling people the name of the syndrome because I knew they would Google it and see the misleading Wikipedia page, after doing the exact same thing myself. The Social Worker from the hospital said she did a quick search and found a support group for Prader Willi Syndrome, so I filled out the new parent form and read, I read everything there was to read on the website, over and over again to get a grasp on what this diagnosis could mean for our family. Emphasis on could, because PWS has such a wide range and affects every person a little bit differently. It was then other moms reached out and I felt comfortable to reach out to other moms with a child of the same age. It is because of this group I have connected with another mom and whenever we have a bad, scary, or unnerving thought about anything we pick up the phone. It is nice to not feel judged for your thoughts and have someone who completely gets it as a safe place to land after having those types of thoughts.
What motivates you to donate to PWSA | USA, and in your case, host a fundraising event that benefits our organization?
So, from the time I discovered that misleading Wikipedia page I knew I wanted to get the word out about what PWS truly is and how it can affect loved ones, which is where the trivia night came in. My husband and I love a good party, so we figured what better way to celebrate Audrey, educate the public, and raise funds for our newly adopted cause. Tables sold out over a weekend and a waitlist even formed! The night came and it was truly magical, not only did we get to raise about $16K for PWS but we were surrounded by close friends and family who love our daughter as much as we do.
When discussing who to donate the money to I came back to the first people to reach out after diagnosis and who talked me through my darkest of days. This is not a road anyone imagines for themselves but the people who make up PWSA make you feel like you are not alone and if we could support their mission and help them continue to do that for other newly-diagnosed families then that is what matters most to us. I feel unmatched support and gain so much strength from being a part of the PWS community PSWA | USA has built.
Is there anything you’d like to share with other families, or any advice you would like to give?
Just know the beginning is scary and the unknown is frustrating but once you can get past the initial shock of a diagnosis you will realize you still have a beautiful, loved child who is yours. PWS will change you, challenge you and honestly give a whole new meaning to your world. PWS is scary but with such a strong community you never feel alone.
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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.