I was born with VACTERL Association, and each part of the acronym has affected me in its own way.

My spine is missing multiple vertebrae and is fused at my neck.

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I was born with an Anorectal malformation and now have a colostomy.

I have dextrocardia, a neurogenic bladder that cannot empty on its own, and a duplex kidney. I use a sacral nerve stimulator to help manage my bladder.

I was also born with a tracheoesophageal fistula, which was repaired when I was just two days old.

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My limbs are all different from each other. 

Growing up, I found it incredibly hard to fit in—not just socially, but medically. I didn’t fit into one category or one condition. I fitted into many.

I connected with different charities, but each one focused on just one part of me, one letter of VACTERL, rather than seeing me as a whole person.

That was one of the hardest parts of my childhood. I often felt misunderstood, and at times even dismissed, by professionals and teachers who didn’t fully grasp the complexity of living with multiple conditions. It felt like I was being reduced to separate pieces, rather than recognised as one whole person navigating all of it at once.

For a long time, I struggled with my identity. Everything changed when I was 15 and I found a Facebook group for VACTERL teens and adults. For the first time, I saw people like me, people who understood.

I connected with others, met some in person, and slowly began to build confidence. I realised that what I was experiencing was valid, and that I wasn’t alone.

As I got older, transitioning from paediatric to adult care was another major
challenge. Learning to advocate for myself while also allowing my mum to step back was difficult and exhausting. It felt like navigating a system that was never designed for someone like me.

More recently I underwent genetic testing and was diagnosed with a TRIO-related neurodevelopmental disorder. This brought a new level of understanding. I began to see that not everything I experience is solely due to VACTERL. The overlap between TRIO and VACTERL helped me make sense of my body and my differences in a deeper way.

 

It was eye-opening but also empowering. Throughout this journey, peer support has been one of the most important parts of my life. It’s often overlooked in healthcare, but for those of us with rare conditions, it can be life-changing. It gives us the tools to navigate complex systems, the confidence to advocate for ourselves, and most importantly, a sense of purpose and belonging.

That sense of belonging is why communities like VACTERL Visionaries matter so much to me.

They see the whole person, they understand that we are not separate diagnoses, we are individuals living with complex, overlapping experiences.

I want to support others who feel like they don’t fit into one box. I want people to know that you are not just a list of conditions; you are a whole person, and there is a community that sees you that way.

 

You are not alone.