“I wasn’t supposed to make it—but here I am, rewriting the rules of survival one chapter at a time.”
That’s not just a catchy opening line; it’s the reality of my life. Born at 28 weeks, back in a time when neonatal medicine was still catching up to the miracle of premature survival, my journey began with uncertainty. My twin brother, Nicholas, didn’t make it, and I grew up carrying both the weight of that loss and the immense gratitude of being the one who did.
But survival isn’t just about breathing—it’s about fighting.
The Early Battle: Prematurity and the Unknown
Growing up as a premature baby wasn’t easy. Developmental delays, difficulty fitting in, and a world that wasn’t built for someone like me meant that I had to navigate life differently. I was hard of hearing, struggled to read until I was 13, and constantly felt like I was trying to catch up. And let’s be honest—society doesn’t always have patience for those who take the scenic route to learning.
Dyslexia, suspected ADHD, and autism weren’t terms I had growing up. They were just the unnamed barriers I fought against daily. School wasn’t just hard; it was a battlefield. But if there’s one thing I’ve learned, it’s that survival isn’t just about making it through—it’s about proving you belong.
Guilt and the Weight of the ‘Why Me?’
For much of my life, I carried a deep, unspoken guilt about Nicholas. I survived, and he didn’t. That alone was hard enough to process, but for years, I believed that somehow, I had taken something from him.
Because Nicholas had anencephaly—a condition where parts of the brain and skull don’t fully develop—I thought I had absorbed the folic acid that he needed, leaving him without a chance. It wasn’t until about eight years ago that I found out the truth: I had actually been born with no folic acid in my system. For the first two years of my life, I had to have folic acid drops to compensate.
That should have brought relief, but guilt isn’t rational. Even knowing the truth, I still felt the weight of his absence. I still felt like I had to live for both of us—to make my survival mean something.
Motherhood: A New Chapter of Survival
When my daughter, Amelia, was born prematurely, my world shifted again. Suddenly, I wasn’t just surviving for myself—I was fighting for her. And I realised that all the challenges I had faced growing up were preparing me for this moment.
I knew what it felt like to be the child who wasn’t expected to thrive. I knew what it meant to hear the whispers of “Will they ever catch up?” and to feel the weight of statistics that said otherwise. But more importantly, I knew what it took to push past those expectations.
Becoming a mother to a premature baby reignited my purpose. I didn’t just want to survive anymore—I wanted to change things.
Turning Survival Into a Mission
That’s why I started speaking out, writing, and advocating. No parent should feel alone in the NICU. No neurodivergent child should feel like they’re less because the world moves faster than they do. And no one should ever be told that they “weren’t supposed to make it” without also being told, “but you did, and that matters.”
So, this is my journey—a life defined not by limitations but by determination. A life where “can’t” doesn’t exist, only not yet. A life where guilt may still linger, but purpose speaks louder. And a life where survival isn’t the end goal—it’s just the beginning.
Join Me on This Journey
If you’ve ever felt like the odds were stacked against you, if you’ve fought battles no one else could see, or if you’re navigating parenthood with the weight of the unknown, you’re not alone.
Let’s rewrite the rules of survival together.
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