Caring for someone with Prader-Willi syndrome (PWS) brings unique challenges and wins that few can anticipate. It can require constant adaptability, understanding, and strength.
PWS is a complex, rare genetic disorder affecting multiple systems in the body, leading to challenges such as low muscle tone, growth and hormone deficiencies, developmental delays, and hyperphagia, an intense, persistent sensation of hunger.
For caregivers, these features can often require constant vigilance, planning meals, managing behaviors, coordinating therapies, and ensuring safety in environments where food is present. It often means navigating medical appointments, educational planning, and emotional ups and downs that few outside the PWS community truly understand. The emotional, physical, and logistical demands are immense, yet caregivers rise to meet them every single day.
Behind every person living with PWS stands someone who shows up, day after day, in ways both seen and unseen. These caregivers, parents, grandparents, siblings, and friends carry an unshakable commitment that deserves to be recognized not just during Caregiver Awareness Month in November, but every day of the year.
Caregiver Awareness Month is a moment to pause and honor the people who hold everything together. It’s an opportunity to shine a light on their resilience, celebrate their wins, and remind them that they are not alone on this journey.
We want to say thank you, from everyone at Soleno, to the caregivers who show up each day with strength, compassion, and unwavering dedication. Your care makes a lasting difference and reminds us why this work matters.
The Unseen Strength of PWS Caregivers
Caregivers in the PWS community wear many hats: parent, nurse, advocate, teacher, nutritionist, researcher, comforter, and cheerleader. Their daily routines often revolve around structure and predictability, balancing love and boundaries to keep their loved one safe and supported. It’s work that requires not only patience and compassion, but a deep understanding of a condition that often touches every aspect of life.
For Maggie, mother to Bridget, caregiving has reshaped how she views the world.
“Being a caregiver has shaped my perspective on life because I have come to realize there is nothing I can’t handle. Every time a challenge has been thrown my way, I’ve been able to figure it out. As a result, I no longer look at anything as being impossible. I will overcome any challenge,” she shares. “This was not a path I would have chosen for myself, but now that I’m on the journey, I couldn’t imagine anything else.”
Like many caregivers, Maggie’s days are filled with small, meaningful moments. Gentle reminders of what matters most.
“For me, the moments of pride that stand out as a caregiver are when Bridget is proud of herself,” she says. “When she is proud of herself, it makes me that much prouder of her. I get the privilege of having a front row seat as my daughter continues to defy the odds and exceed expectations.”
Every step forward, no matter how small, is a reminder that progress continues, even when the days feel hard.
Redefining Joy, One Win at a Time
Caring for someone with PWS means redefining what success looks like on your own personal terms. Progress isn’t always linear. It can be as simple as watching a child swing independently or speak up for themselves in a moment of courage.
For Dini, mother to Ayoni, these small wins represent profound milestones:
“When I see Ayoni stick up for herself, I feel so proud knowing that she will be okay,” she says. “Seemingly small wins like watching her learn how to pump her legs on the swings give her so much joy and pride in herself that maybe other kids take for granted. With our kids, they cherish every win.”
It’s a perspective many in the PWS community share, one that comes from seeing life through a different lens and learning what truly matters.
“Being Ayoni’s caregiver helps me put the world into perspective,” Dini adds. “I am more focused on my fierce prioritization of family, health, and joy.”
Caregiving for a loved one with PWS means noticing the beauty in small, everyday achievements and realizing they are not small at all.
The Loneliness Behind the Love
Caregiving is often described as both a rewarding and isolating experience. For PWS caregivers, that isolation can feel magnified. The need to manage food security, anticipate behaviors, and navigate medical complexities can make it difficult to participate in everyday activities that other families may take for granted.
Amber, a caregiver and advocate, shares this candidly:
“One of the challenges caring for someone with PWS is the feeling of being isolated. Oftentimes, we exclude ourselves from activities, events, or celebrations because it can be a safety risk as it relates to behaviors or food. It can also cause isolation due to assumptions about others not understanding their condition or not wanting to be a burden.”
That loneliness can weigh heavily, especially when others don’t see the constant vigilance some caregivers live with. But within the PWS community, many caregivers find connection, and with it, a renewed sense of understanding and support.
“The loneliness of being surrounded by families who don’t understand the struggles of PWS can be so draining sometimes,” Dini says. “Anything can be done when we come together!”
Finding Purpose in the Challenge
There’s a quiet heroism in caregiving, a daily commitment that’s rarely celebrated but incredibly important and meaningful. It’s what Dominique calls “exhausting gratification,” a paradox that perfectly captures the emotional complexity of the caregiver experience.
“Being a caregiver to a PWS child is such a high honor,” Dominique shares. “It’s exhausting gratification! Some days you feel unstoppable and other days you don’t want to crawl out of bed. But the total picture is that, although the diagnosis is there, most days I just treat my daughter like any other child. Her diagnosis doesn’t make her who she is. It’s just an added level of care.”
For Dominique, every milestone reached by her daughter carries deeper meaning.
“Seeing my daughter finally achieve ALL milestones is a joy for me,” she says. “Especially since she was handed off to me in the hospital, and the nurses apologized profusely, insinuating she would never walk or talk. I knew in my gut they were not God! They couldn’t tell me what my daughter was capable of.”
Her words reflect what many PWS caregivers have learned firsthand: determination and advocacy can lead to progress once thought out of reach.
Lessons in Patience, Grace, and Love
No two journeys look the same, but caregivers often share similar reminders: practice patience, give yourself grace, and appreciate what makes your loved one who they are.
Dominique puts it beautifully:
“Have patience and grace for yourself while you pour your love and energy into a PWS individual. Realize it’s a marathon, not a sprint. Take breaks when you need to, pick your battles wisely, and never assume just because they have a diagnosis that they aren’t smart or capable. Letting them be unapologetically themselves is the most beautiful thing you can do.”
Tammie, another caregiver, agrees that the journey is challenging but deeply rewarding:
“Being a PWS caregiver is exhaustingly satisfying and fulfilling,” she says. “Climbing those mountains together is challenging; however, when you see them succeed, win, or fulfill a dream, all of the frustrations melt away and your heart is full once again.”
In those moments when a goal is reached, a smile appears, or a laugh breaks through the exhaustion, the love at the heart of caregiving shines brighter than any challenge.
A Message to Caregivers Everywhere
To every caregiver supporting someone with PWS: your efforts matter. The early mornings and late evenings, the planned meals, and countless appointments are all acts of love that make a difference. Even when it feels unnoticed, your efforts are shaping hopeful futures.
Maggie’s message to other caregivers sums it up simply but powerfully:
“I see you. I see the work you are putting in day in and day out, and you are doing a great job. So much of what we do can easily go unnoticed and unappreciated.”
And as Dini shared in a heartfelt reflection to those living with PWS:
“We see the depth of your hearts, your kindness, your care for others. Your humor and insights don’t go unnoticed. Your creativity and curiosity are spectacular. You ride horses, swim, dance, cook or read in ways that you never knew you could! We know you add so much goodness to the world already. And we know you have more you’d like to do. So, we won’t stop until you can. And in the meantime, we’ll be here to share in every race, every laugh, and every milestone. We’ll celebrate the whole way there with you.”
Celebrating Caregivers During Caregiver Awareness Month
This month and every month, Soleno honors the caregivers who show up with quiet strength and unwavering care. Your advocacy and presence make a difference every day.
Caregiver Awareness Month is more than a time of recognition; it’s an invitation to support one another and remember that no one is walking this road alone. Whether you’re a parent just beginning this journey or a seasoned advocate navigating adolescence or adulthood with your loved one, your experience matters.
The road may be long and unpredictable, but it’s filled with moments of pride, laughter, and love that make every challenge worth it. You’re more than caregivers. You’re advocates, educators, and a vital part of creating a more understanding world.
From all of us at Soleno: thank you for all you do.
C-US-PWS-00147 v1 11/2025
