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 is Huma Onorato, who made a generous gift in honor of her daughter living with PWS, Lily. Thank you, Huma! We are incredibly grateful for your gift and sincerely appreciate your support.
Huma shares her family's journey with PWS, what motived her to donate, and some helpful advice for families navigating their own PWS journey below.
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Q: When did you learn about Lily's PWS diagnosis?
A: Lily and her twin sister Layla were born three months premature. Lily weighed 1 lbs 3.4 oz at birth and while both girls needed to stay at the NICU, Lily needed far more support. She rarely moved or even opened her eyes, and she breathed using the highest level of ventilator. We called and visited the hospital multiple times each day and developed a bond with the medical team as they cared for the girls, the entire time worrying that Lily wouldn’t pull through. After one month, the doctors told us the genetic screening found something, and we were given the Prader-Willi diagnosis a few days later.
After 90 days in the NICU, Lily was able to come home but she still required round-the-clock care. I learned how to place her NG tube and many other medical skills I never thought I would need. I took both girls to a never-ending number of doctor appointments. She also qualified for her own nurse for the first two years. But thankfully as she has gotten older, she’s grown so much stronger and independent. She wants to run and climb everywhere she shouldn’t. She tells all of her stuffed animals how much she misses them when we get home. And she spends half of her equine therapy hugging her horse. She’s a fantastic kid and we’re very hopeful for her future.
Q: What motivated you to donate to our organization?
A: I recently graduated from a three-year bank management program and unexpectedly received the Faircloth Family Award for Excellence. This award is based on the values of continued learning, passionate giving and purposeful living and came with a cash prize which I could use at my discretion. I could think of nothing better than to donate to PWSA | USA. I feel the organization embodies those values and Lily’s life is infinitely better through its work.
Q: How did you learn about PWSA | USA?
A: Like everyone, we felt lost after receiving Lily’s diagnosis. Our genetics counselor from the NICU did some research for us (she warned us to stay away from Google) and recommended we start by submitting a ‘New Diagnosis Form’ on the PWSA | USA site. A parent advocate called my husband soon after and let us know that we were not alone in this. She also advised us to do two things as soon as possible: find a PWS specialist and start growth hormone. That conversation is what led us to visit Dr. Miller in Florida. Thanks to PWSA | USA, we had our first meeting with Dr. Miller when Lily was just six months old and started her growth hormone soon after.
Q: Is there anything you’d like to share with other families or any advice you would like to give?
A: We learned early on not to spend a second thinking “why us?” While we dealt with Lily’s diagnosis in our own ways, we know that that question has no good answer. It’s also the wrong question to ask since it assumes something is wrong, and there is nothing wrong with Lily. We’re all born a little different, she more than others, but she’s feisty, and silly, and so cute, and exactly what this world needs. So, for us, it took very little time to adjust to this new life, but it helped us immensely to never think “why us” and to focus on how amazing Lily and Layla truly are.
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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.
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.
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.
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.
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.