Our Story of Embracing What Sets Us Apart

Nothing quite prepares you for the moment you’re told you and your children have a rare genetic syndrome. Koolen-de Vries syndrome wasn’t something I had ever heard of before, let alone imagined would become such a huge part of our lives. When the diagnosis came, it felt like the ground shifted beneath me. Questions flooded in, but the biggest one was the loudest: how do I help my children grow up in a world that doesn’t always make space for kids who are different?

At first, I was weighed down by a blameless guilt that made me question everything. Guilt for something I had no control over. Guilt that my children would carry something I didn’t even know I had. It took time, a lot of therapy, and a journey through grief and healing to finally let go of that guilt and make peace with our reality. I learned that what we were facing wasn’t something to hide or be ashamed of. It was something to understand, to embrace, and eventually to grow from. I knew if I wanted my children to thrive, I had to lead the way.

I remembered what it felt like to be the odd one out as a child. I was the kid who struggled in school, who couldn’t quite catch up, who felt like I was always a few steps behind. I grew up feeling like I didn’t belong, like I was flawed or broken. Those feelings didn’t just vanish with age, they followed me into adulthood. But the thought of my children feeling that same isolation was heartbreaking. I couldn’t let that be their story.

So I chose to be brave. I chose to stop hiding the parts of myself that made life harder and start seeing them as part of what made me who I am. I decided that if I didn’t see our story represented in the world, I’d write it myself. That’s where Thrive Rare began. Becoming an author was something I had dreamed of for years. But when I finally put pen to paper, it wasn’t just for me anymore. It was for my children. For anyone who’s ever felt like they didn’t belong. For every parent who has cried silent tears wondering how to help their child navigate a world that doesn’t see their worth.

Writing gave me a sense of purpose I didn’t know I needed. It gave meaning to the challenges I had faced, and it reminded me that we don’t have to wait for someone else to tell us we matter. We can create something meaningful from our pain and turn it into purpose, not only for ourselves but for others walking similar paths.

My children are already becoming their own people. They are full of curiosity, creativity, and heart. They have things they love to learn and do, and I delight in watching them explore the world in their own unique way. Every step they take, no matter how big or small, is a victory. They are growing beautifully in their own time, and that’s something worth celebrating every day.

I’ve found peace with Koolen-de Vries syndrome. More than that, I’ve found power in it. It’s part of what makes our family story so rich and rare. It’s connected me with others who are navigating life in bodies and minds that work a little differently, and it’s taught me that being different isn’t a flaw. It’s a kind of strength. It takes creativity, courage, and connection to carve out a space for yourself in a world that doesn’t always understand you.

Then came another piece of the puzzle. In December 2024, I was diagnosed with ADHD. I didn’t expect it to affect me the way it did. I thought I had already found my footing as a neurodiverse woman, but this new diagnosis made everything sharper and more emotional. Suddenly, my forgetfulness, my difficulty focusing, my trouble regulating my emotions, all had a name. And while that offered some relief, it also felt like holding up a mirror to all my insecurities. I had to go inward again. I had to remind myself that this, too, wasn’t my fault. But it was part of my reality now, and with that came responsibility. If I wanted to keep showing up for my family and for myself, I had to get honest about what I needed and where I struggled.

So I got practical. I created routines that work for my brain, not against it. I stuck a to-do list on the fridge to help bring structure to my chaotic thoughts. I carved out time for movement, rest, fresh air, nourishing meals, connection with loved ones, and the creative work that keeps me grounded. I began reaching out for more support in areas where I felt overwhelmed, and instead of seeing that as weakness, I started seeing it as wisdom. Because we are allowed to ask for help. We are allowed to take up space. We are allowed to live a life that honours our needs, our pace, and our truth.

If you are living with a diagnosis or loving someone who is, know this. You are not broken. You are not alone. You deserve to live a life that reflects your worth, not just in moments of strength but in moments of struggle too. Every part of you has value. Every part of your journey matters.

Our lives may be rare, but they are filled with purpose, strength, and hope. And that, to me, is something worth loving out loud.

Author: Becky Tilley