June 1st, 2026
When Support Changes Everything
In those early weeks, it felt like there wasn’t anyone behind the scenes helping make things better for Leah. For a long time, it really did feel like it was us against the world. That’s when PANTHERx® Rare Pharmacy came into our story.
Our journey began when our newborn daughter Leah was struggling to eat and couldn’t maintain her body temperature. At just six weeks old, after follow-up testing, we learned she had a genetic syndrome, but didn’t know which one. What followed was more testing, a long hospital stay, and another six weeks of waiting. Those were the longest six weeks of my life. Then the diagnosis was confirmed: Prader–Willi syndrome, a rare genetic condition that affects growth, metabolism, and behavior, including feeding challenges and an ongoing drive to eat.
I couldn’t help but picture a future that felt completely different from what we had imagined—one where our family life wouldn’t be normal and where holidays and gatherings might never feel the same.
While the early years took a lot of planning, navigating, and adjusting, today our lives have improved dramatically. Looking back now, I wish I could have seen what life would look like all these years later. It’s not what we feared; it’s something we’ve learned to navigate together. After Leah started therapy, it took a little time, but we noticed real changes. She comes home from school with food still in her lunchbox—something that never used to happen. I’m asking her if she’s ready for dinner. Those small, everyday moments have brought a sense of relief and normalcy back to our family. We’re not watching the clock or worrying constantly.
Over time, things started to feel more manageable—not just because of the progress Leah was making, but because we realized we didn’t have to do it all on our own. We had the support of a care team, doctors, advocacy groups, and PANTHERx.
When Leah’s endocrinologist told us a treatment had been approved by the FDA—and was actually covered by insurance—I was beyond relieved. Within a week of getting the prescription, the medication was at our door. It honestly felt like answered prayers, and the experience we had with PANTHERx was unlike anything I had seen before. They’re doing something different than other specialty pharmacies.
Having the right support made a real difference. PANTHERx has a whole team dedicated to making our lives easier, and we feel that.
They don’t treat Leah like just another patient. We can tell this is personal to them. They check in, they care about how she’s doing, and they celebrate seeing her thrive on her medication right alongside us.
And when you’re living in this rare disease world, that kind of support changes everything. It doesn’t feel like we’re doing this alone anymore. It feels like we have our own little team, people who truly care about her outcome and are right there with us every step of the way.
That means everything as a parent.
– Jennifer, Leah’s Mom
"They don’t treat Leah like just another patient. We can tell this is personal to them. They check in, they care about how she’s doing, and they celebrate seeing her thrive on her medication right alongside us."
PANTHERx Perspective
When I think about Leah and her family, it never feels like just part of the job. From the beginning, you get to know the person behind the prescription—their routines, what’s hard, what’s improving, and the small things that matter.
We have a whole team working behind the scenes, all focused on one goal: making life a little easier for families who are navigating something incredibly complex. Rare diseases can feel isolating, like it’s you against the world. Our role is to make sure families know they don’t have to do it alone.
We’re in their corner. We advocate for them. We want to see them succeed and live full, meaningful lives just as much as they do.
And it’s not just about managing therapy; it’s about staying connected. We look forward to check-in calls. We want to hear how things are going, what’s changed, and what still feels challenging.
Because Leah and her family live close to to our PANTHERx headquarters, we’ve had the pleasure of welcoming them for in-person visits. And when we see Leah’s smile and her continuing to thrive, that’s incredibly meaningful for us. Recently, Leah’s family shared that she achieved an important academic milestone at school, and that is something we all celebrated.
Because at the end of the day, this work is personal. It’s about showing up, staying present, and making sure every family knows they have a team that truly cares about their health—and their lives.
– Tabatha Shoaff, Patient Care Coordinator, PANTHERx Rare
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