Anna and Fiona

Meet Anna, an inspiring 4-year-old, living in Roscommon with her mother Fiona and brothers. A cheerful child, Anna is passionate about books, unicorns, colours, and playdough. She has a keen interest in sea creatures, robots, dogs, and enjoys farming with her grandad, especially when it involves eating his steak dinners.

Anna is not just any child; she is a Changemaker, bravely living with a range of rare heart defects, including double outlet right ventricle, aortic stenosis as well as congenital heart disease (CHD), collectively referred to as complex CHD. She was diagnosed antenatally at 20/23 weeks and underwent corrective surgery for hypoplastic aortic arch immediately after her birth.

Fiona, who also lives with CHD, has become a passionate advocate for her daughter and others living with rare conditions. Through their advocacy, Anna and Fiona hope to encourage a more holistic approach to treating rare diseases – one that addresses not just the medical aspects, but also the psychological effects experienced by the patients, their siblings, and parents. Anna's journey is far from easy, but her spirit is undeterred. Her story serves as a reminder that everyday matters and that fear should never deter us from living the life we love.

In Fiona’s words, her experience of being a parent to a child with rare heart defects can be described as "Inspired”, “Driven”, “Uncertain” and “Emboldened”.

Photography by Julien Behal

Anna and Fiona