When my daughter Leslie was born nearly 28 years ago, I had no idea what lay ahead. At just three weeks old, she was diagnosed with Prader-Willi syndrome (PWS), a rare genetic condition that affects muscle tone, development, and the hypothalamus—the part of the brain that controls hunger.

From the very beginning, Leslie faced challenges. Many babies with PWS require feeding tubes, but through persistence, she learned to take a bottle. Her early years were filled with physical, occupational, and speech therapy, along with specialized programs like hippotherapy and social skills training.

But one of the most difficult aspects of PWS is something most people don’t immediately understand: individuals with the condition never feel full. That constant hunger creates real and dangerous risks. In our home, we lock the refrigerator, freezer, and pantry—not out of choice, but out of necessity to keep Leslie safe.

Despite these challenges, Leslie achieved something we are incredibly proud of—she graduated from high school with a regular diploma. We made that possible by placing her in a private school with one-on-one support so she could remain in a mainstream environment.

Adulthood, however, has brought a new set of challenges.

Because of her condition, Leslie requires continuous supervision. Finding employment has been nearly impossible. Most workplaces involve food in some way, and without support, her food-seeking behaviors can put her at risk. Even with supervision, there are limits to what employers are able—or willing—to accommodate.

In her late teens, Leslie also began experiencing behavioral challenges, including running away, climbing over gates, and putting herself in dangerous situations. With the help of medical professionals and years of support, she has made tremendous progress. Today, she is a kind, compassionate young woman who has learned to manage her emotions—but she still requires 24-hour care and cannot live independently.

Like many families, we are now facing one of the hardest realities: what happens when we are no longer here to care for her?

There are very few residential programs specifically designed for individuals with Prader-Willi syndrome, and those that do exist often have long waitlists. Access to long-term care depends heavily on where you live, with inconsistent funding and support from state to state. For families like ours, that uncertainty is overwhelming.

We believe there should be a more consistent, national approach to ensuring that individuals with complex conditions like PWS have access to safe, appropriate housing and lifelong support.

Leslie currently lives at home with us, along with a professional caregiver we employ to help meet her needs. But we know this is not a permanent solution. Planning for her future is not optional—it is urgent.

My journey into advocacy began when Leslie was first diagnosed. I remember feeling completely lost, until I met another mother who was leading the Prader-Willi Syndrome Association USA chapter in Florida. She told me something I’ll never forget: “Don’t worry—you’ll be doing this one day.”

I didn’t believe her at the time. But she was right.

Through that community, I found not only support, but purpose. I also saw firsthand that many families did not have the same resources we did—whether financial, emotional, or logistical. That realization changed everything for me.

It’s why I fundraise.
It’s why I advocate.
And it’s why I continue to share Leslie’s story.

I will keep showing up in Washington, D.C., and wherever else I’m needed, to fight for better systems, better support, and a better future—for Leslie and for every family navigating life with a rare disease.

Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.

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