I was born in 1952 with Oesophageal Atresia and Tracheo-Oesophageal Fistula (OA/TOF) at a time when survival rates for the repair were around 20%. 

 

From the very beginning, life tested me in ways most people can’t imagine; feeding difficulties, choking episodes, and hospital stays. 

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Each challenge has shaped me, teaching me resilience, determination, and gratitude. Despite everything, I feel fortunate to have survived, and I carry that sense of survival and hope with me every day.

 

Through the TOF community, I met Kate and Alan and have attended several TOF events, where I’ve had the chance to connect with others in the rare disease community. These experiences have been incredibly important to me.

 

Learning more about my anomalies later in life has sparked a strong passion to help ensure that people with this rare association of conditions can access the support they need. This may involve signposting to organisations, sharing information, or offering insight into the conditions that make up VACTERL Association.

 

Although I do not have the three features typically required for a formal VACTERL diagnosis, I have always felt proud to be part of this community. From the beginning I have shared my experiences, offering advice, reassurance, and support to other members. I hope that my calm, empathetic presence helps others feel understood and supported.

 

Being able to dedicate myself to helping others, combined with my own lived experience, has made this community incredibly meaningful to me. I am grateful to be a trusted voice for adults living with rare congenital conditions.

 

As someone without direct lived experience of VACTERL itself,

I can also provide an additional perspective to help ensure that the material created is clear, accessible, and easy to understand.

My role is to help translate or highlight technical language that may naturally develop over years of managing congenital anomalies, so that individuals and families without medical expertise can engage with the information more easily.

In doing so, I help ensure that the content remains supportive, practical, and accessible to a wider audience.