Our Biggest WINS this year and what you can expect in 2025!
As I sit down to write this, my heart swells with pride and gratitude. The past few years have been a whirlwind of challenges, milestones, and moments of quiet triumph. Luna, our beautiful, determined daughter, and our family have been on a journey unlike any other—a journey navigating life with Prader-Willi Syndrome. And today, I want to celebrate just how far we’ve come as a team in 2024.
The early days: A test of strength and faith
When Luna was diagnosed with Prader-Willi Syndrome, it felt like the world shifted beneath my feet. Questions flooded my mind. What would her life look like? Would she meet her milestones? How would I navigate this new reality? As the days turned into months, I learned to trade fear for resolve. Luna showed me her strength in those early days—through every therapy session, every tiny muscle movement, and every smile that lit up her face despite the obstacles she faced…. And she faced many as tiny as she was.
The first two years of Luna’s life were filled with a million doctor consults and countless therapy sessions—physiotherapy, occupational therapy, and speech therapy. Each one brought its own set of challenges, but we faced them head-on. We celebrated the smallest victories because every tiny step forward felt monumental. And then, at the beginning of this year, a moment we had prayed for arrived………Luna took her first steps.
Walking into a new chapter
Those first steps were nothing short of miraculous, literally. Watching Luna walk was like witnessing a sunrise after a long, dark night. It was a result of almost two years of relentless hard work—not just from Luna, but from our entire support system – therapists, family, friends and even her big brother Luka, who cheered her on every step of the way.
Luna’s determination has always been awe-inspiring. Even when it seemed impossible, she never gave up. Those first wobbly steps quickly turned into more confident strides, and now, Luna walks with a pride that’s contagious. She reminds me every day that perseverance is more powerful than doubt. And trust me we all need that reminder every now and then.
A milestone year
This year has been a year of firsts for Luna. She completed her first year of school, a milestone that felt like a dream not too long ago. Watching her interact with peers, learn new skills, and thrive in a school environment has been heart-warming. Her teachers have been incredible pillars, supporting her growth and celebrating her achievements alongside us. Another major milestone was her first neurologist appointment. We underwent a baseline assessment to understand where Luna stands developmentally, and the results left me speechless: Luna is on par with her peers and age group. For a mom who has spent countless sleepless nights worrying about her future, this news was a calm my soul had longed for.
Embracing growth at home
While Luna’s progress has been nothing short of a miracle we know the journey is far from over. This year, we’ve increased our focus on home therapy, working on fine and gross motor skills. Whether it’s threading beads, stacking blocks, or practicing jumping and balancing, every activity is a step toward greater independence.
Luna approaches each task with curiosity and determination, and I’ve learned to follow her lead. I’ve also learned to be patient—with her, with myself, and with the process. Progress doesn’t always come quickly, but it’s always worth the effort.
Reflecting on the journey
Looking back on how far we’ve come, I’m overwhelmed by the love and resilience that has carried us through. Being a mother to a child with a rare condition like Prader-Willi Syndrome isn’t easy, let alone trying to be a “normal” family. There have been tears, moments of frustration, and days when the road ahead felt impossibly steep. But there have also been moments of pure joy, like hearing Luna’s laughter fill a room or watching her achieve something we once thought might take years…. AND there were many of these let me add.
Through it all, Luna has taught me the true meaning of strength and perseverance. She’s shown me that even when life doesn’t go as planned, it can still be beautiful. Together, we’ve turned challenges into opportunities and setbacks into stepping stones.
What you can expect from us in 2025
Writing this blog is such an honour and in 2025 I want to focus on not only bringing you along in the depths of the journey but also equipping other moms with information and resources that may be useful in their own circumstances or family situations. I want to share therapy resources, our favourite recipes for children with medical diets, lessons learnt and more awareness around trending issues.
A message to other moms as we close off this 2024 chapter
To all the moms walking a similar path, know that you are not alone. Celebrate every milestone, no matter how small. Surround yourself with people who lift you up, and never underestimate the power of your love and advocacy. Our children are capable of amazing things, and they will continue to surprise us with their strength.
As for Luna and me, we’re just getting started. There’s still so much to learn, so many goals to achieve, and so many moments to cherish. But today, I want to pause and honour the journey—the hard work, the love, and the sheer determination that have brought us to this point. Your are unstoppable Luna Rose.
