Managing daily life can bring challenges for families and individuals affected by Prader-Willi syndrome (PWS), but when a crisis strikes, having someone to lean on who truly understands can make all the difference. PWSA | USA’s medical and family support services offer a vital safety net, guiding families through moments that feel overwhelming and providing urgent help when it’s needed most.
A Vital Resource in Times of Crisis
“Often, families feel like they have to educate their healthcare providers about PWS,” says Lynn Garrick, MSN, RN, PWSA | USA’s Medical/Research Coordinator. “Many providers are unfamiliar with the condition, and sometimes they’re simply too busy to listen.” This is where PWSA | USA steps in, offering expert resources and guidance. From journal articles to practical recommendations, Lynn and the Family Support team equip families with the tools to communicate effectively with healthcare professionals, especially in emergency situations.
Gracie and Angel’s Story: A Mother’s Lifeline
For Gracie, the support from PWSA | USA became essential in May 2024, when her 11-year-old daughter, Angel, who is living with PWS, encountered a medical crisis. What started as a routine sleepover practice for Angel turned into a critical moment. As Gracie describes, “We were actually planning to take a cruise with our biggest kids in July. So, we had been practicing for Angel to stay with our aunts and one of my friends who was doing some tutoring during the day. I think over the course of the weekend, as we were practicing these sleepovers, she ate a little too much possibly. I wouldn’t say that she had a gorging incident or anything like that. I think maybe each portion size was a little bit more than what we would normally give her. My aunt called us in the middle of the night and said, ‘She’s trying to go to the bathroom. She’s going back and forth from the couch to the toilet. And, you know, she’s just really sick. You need to take her to the emergency room.’”
For guidance through the situation, Gracie called PWSA | USA’s 24-hour Crisis Line – (941) 312-0400 – and spoke to Kim Tula, MS, CSW, PWSA | USA’s Senior Family Support Counselor and Trainer. “I called Kim on the way to the ER. I knew the hotline was there, and she called us back just as we were talking to the ER doctor,” Gracie recalls. Kim spoke with the doctors, sharing the GI Algorithm Chart specific to PWS—a crucial piece of knowledge that ensured Angel received the appropriate treatment quickly.
Kim reflects, “In the time of crisis, I reassured Gracie, provided her with emotional support at the time, and then followed up by sending messages and phone calls. I wanted to make sure everything was going as planned and to let her know I was always there if she needed emotional support of any kind.”
For Gracie, this support was a lifeline. “There were several phone calls. Being able to call Kim on the way down there and just being so frantic and never having seen Angel as sick as she was. But knowing that there was a support system out there was so reassuring. Kim stayed calm and collected, and could talk to the doctors and tell them things I just didn’t know. I think I cried through several conversations with Kim, but I was thankful knowing she was there.”
Comprehensive Support for Every Family
Beyond emergencies, PWSA | USA provides families with continuous guidance and resources. “Sometimes, it’s just lending an ear,” says Lynn. “Parents need someone who understands and who can listen without judgment.” Whether it’s helping a family find a local specialist or providing materials for doctors, PWSA | USA ensures that families never feel alone on this journey.
Kim echoes this sentiment, highlighting the importance of ongoing support, especially in crisis situations: “It’s important for families to have access to the medical and family support crisis because otherwise there’s nothing out there. We get a lot of calls. Having that access to us to be able to advocate and connect them with other doctors who are experts in PWS is essential. We are also able to help guide medical specialists by saying, ‘This person needs to be dealt with in this way because they don’t respond the same way to medication or medical treatments.’ We can ensure they don’t take their time during a GI issue, like what Angel experienced. It could have cost her life. But because they skipped all the earlier steps, they were able to proceed and save her life.”
Your Support Makes a Lasting Impact
For 50 years, PWSA | USA has been a trusted resource for families facing some of their hardest days. Whether it’s navigating medical crises or providing emotional support, our organization stands by those affected by PWS, ready to help at a moment’s notice.
By supporting the 2024 Angel Drive, you can make sure these life-changing services remain available for families exactly when they need them. Your donation empowers families like Gracie’s to face crisis situations with confidence, knowing they have an experienced, compassionate team in their corner.
Gracie shares, “We already know that our disease is rare and there may not be a lot of people around it. PWS families are kind of all across the globe, so finding people you can connect with who have similar situations is hard. Knowing that there’s this hub of people that have the wisdom, the experience, and the resources to educate people is very important to us.”
Join Us in Providing Help and Hope
Please consider making a gift to PWSA | USA today. With your support, families impacted by PWS will never have to face their challenges alone. Together, we can continue to turn hope into action for every family in need.
Visit https://www.pwsausa.org/angel-drive-2024/ to donate to the Angel Drive and be part of a future where no family faces a crisis without support.
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.