Hi, I’m Savannah, a proud mom of two beautiful kids—Luka, who is 9, and Luna, who is almost 3. Being a mother is a joy, but when your child has special needs, like Luna, it’s an experience unlike anything you could anticipate; nothing can prepare you. Luna was diagnosed at birth with a rare genetic condition called Prader-Willi syndrome (PWS). For those unfamiliar with PWS, it’s a complex condition that affects almost every part of Luna’s life, from her physical strength to her ability to control hunger and manage everyday tasks. The diagnosis has not only shaped who Luna is but has also transformed our family’s way of life in so many ways. Yet, we have never let her diagnosis define who she is or what she is capable of, and that has been the foundation of her incredible progress. Each day, we see her break through the boundaries set by her condition, showing us time and again that she is so much more than her diagnosis. Her spirit, her determination, and her joy are what truly define her, and that belief is what has carried her forward, helping her achieve milestones we once only dreamed of.

Luna’s Development

Luna’s condition profoundly impacts development, presenting challenges that make typical milestones far harder to reach. From birth, children with PWS often experience low muscle tone, which can delay crucial motor skills like sitting up, crawling, and walking. They may also face cognitive delays and a unique, constant feeling of hunger, which complicates healthy eating habits and self-regulation. For many families, these factors mean that typical developmental timelines are often extended and that progress requires additional support.

Yet, Luna’s journey has been one of defying expectations. She began solid foods just before 6 months, an achievement that was a testament to her strength and determination; with PWS, low muscle tone can make swallowing food a choking hazard. By 9 months, she was sitting independently, and at 13 months, she started crawling—a huge milestone for any child but especially significant for Luna. Although walking took a little longer, she was on her feet just before her second birthday, a proud moment that showed her persistence and resilience. Luna’s milestones are all the more remarkable because she has had to work so much harder to reach them.

Our mantra throughout this journey has been simple yet powerful: “Sink or swim.” We give her the opportunity to swim, and if we see her struggling or “sinking,” we help her—but if we help her from the start, she doesn’t get the opportunity to push herself. We have always given her the benefit of the doubt, believing in her ability to figure things out and discover her own strength. Rather than assuming limits, we allow her to try, pushing her gently but consistently to reach further. This approach has allowed Luna to grow into her potential, showing us—and herself—just how capable she is.

How Our Daily Life Has Changed

One of the biggest adjustments we’ve made revolves around our daily routines. With Luna, every day is carefully structured. Simple activities like dressing, feeding, and getting out the door take extra time and patience. PWS affects her muscle tone, so tasks that many children would complete with ease—like running or climbing stairs—are challenges that require ongoing support and encouragement. At home, our days are filled with a blend of regular therapy sessions, including physiotherapy, occupational therapy, and speech therapy, alongside countless exercises we do daily to help her grow stronger and develop essential skills. Early intervention has been critical in Luna’s progress, and we are deeply committed to giving her every opportunity to thrive, no matter how demanding the routine may be.

And then there are outings. For most families, a trip to the grocery store or a park outing might be straightforward, even enjoyable. But with Luna, every outing requires preparation and planning. We pack snacks that meet her strict dietary needs, as some places don’t always have options that are suitable for her, which can make things a bit more challenging. We carry a first-aid kit in her bag at all times. One reason is her slow cortisol release (our body’s stress hormone). In stressful situations—whether she’s sick or has been in a car accident—if her body doesn’t release enough cortisol as needed, her heart rate increases. We keep cortisol in her first-aid kit just in case. Another medication we always carry is Panado. In May, Luna experienced a series of seizures. Though the cause is still somewhat unknown, doctors suspect febrile seizures, which could happen again. During these episodes, Luna stopped breathing and turned blue, so we need to be prepared for any temperature dysregulation, which can occur with her condition.

Then there are her physical needs. While some kids might run through the playground or eagerly climb up slides, Luna’s low muscle tone means even playground equipment requires extra support and patience. For us, an outing is as much a therapeutic exercise as it is a leisure activity. We support her movements, encourage her to keep trying, and celebrate every bit of progress. When we arrive home after what others might consider a “simple” trip, we’re often exhausted from both the emotional and physical demands of making sure Luna has a safe, positive experience.

Of course, while it’s challenging, it’s also incredibly rewarding. Luna’s progress might look different, but every single step forward is a monumental achievement for her. Our dedication to early intervention has brought her so far already, and we stay optimistic about her future. We give her the benefit of the doubt, knowing that while her road may be different, she’s determined and resilient. Despite the daily challenges, therapies, and endless planning, we hold onto hope, believing in her potential to keep beating the odds.

Having a special needs child has changed our lives in ways we never imagined, but it has also given us a strength and a perspective that we wouldn’t trade for anything. Every milestone, every small victory, is a triumph. Though the road we walk may be different, it’s one filled with resilience, patience, and unwavering love. I want to continue sharing our experiences and even some of the resources we use, hoping to help other special needs or medical mamas out there. Let’s celebrate our kids together. We got this!