Jacquelyn first shared her experience through our Stories of Hope questionnaire. What emerged was a powerful portrait of resilience—hers, and her daughter’s.
From the beginning, her daughter has exceeded expectations. She has met milestones, faced challenges head-on, and continued to grow on a steady, encouraging path. Over time, the long list of appointments that once filled the family calendar has gradually shifted to a manageable annual rhythm. Today, she is thriving, healthy, and living a life that looks wonderfully typical.
Much of the momentum behind that progress, Jacquelyn acknowledges, came from her own determination. After her daughter’s diagnosis, she threw herself into learning everything she could. While their endocrinologist has been a consistent guide, Jacquelyn often finds herself educating other doctors and therapists who have treated few, if any, patients with PWS. Connections with other parents haven’t always come easily, but through this journey, she has discovered something transformative: her own capacity to adapt, evolve, and become exactly the advocate her daughter needs.
Every day brings moments of pride. Jacquelyn and her husband both work full-time, demanding jobs, yet they still manage every appointment and therapy session. “When I try to put on paper how we accomplish the things we do, it’s difficult to describe,” she says. Some victories are quiet, while others feel monumental—like navigating insurance. She has learned the system, fought for what her daughter needs, and succeeded. That persistence has become one of her greatest strengths.
To parents newly facing a PWS diagnosis, Jacquelyn offers reassurance shaped by experience: you will adapt in ways you never imagined. The diagnosis will challenge you, but it will also change you—for the better.
Jacquelyn’s hope for the future comes from two places: the research being advanced by FPWR, and her daughter’s continued ability to rise above every prediction. Her daughter doesn’t just exceed expectations tied to PWS—she exceeds the expectations her own parents hold for her, and those expectations are high.
Jacquelyn is grateful for many things: a dedicated medical team, a supportive family, and a workplace that understands their journey. But she is also grateful for the unexpected ways motherhood has shaped her. She believes she spent her entire life unknowingly preparing to be this child’s mother, and the experience has made her not only a stronger parent but a better human being.
When she thinks about the quote “Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity, and resourcefulness” she responds simply and wholeheartedly:
“THIS. I couldn’t say it any better.”
