Cian and family


Meet Cian, a joyful four-year-old boy from Naas, Kildare, who lives with NARS1, an ultra-rare neurological condition only discovered in 2021. Cian's journey with NARS1 began at the age of eight months when he started missing milestones, but he wasn’t diagnosed until he was two years old. Despite the struggles that come with his condition, Cian's vibrant spirit remains undimmed. A ball enthusiast, he loves to play football, interact with people, and has a great love of being read to.

Cian's diagnosis with NARS1 has been a challenging, and oftentimes lonely, journey for his family. It has required adjustments, acceptance, and resilience. However, Cian's parents, Ross and Caitriona, believe that every day with Cian is a day to make memories. As a result of Cian’s diagnosis, they live life much more in the moment than they otherwise would, which has been a gift.


Cian's story is shared with the hope of raising awareness about NARS1 and other rare diseases. The McCarthy family believe that the journey with a rare disease could be less isolating if there was greater public awareness and understanding. They also feel that changing the public mindset ever so slightly would be a game-changer for people living with rare diseases. Ross and Caitriona hope that Cian's story will inspire other families living with a rare disease to seize every day and create joyful memories.

According to Cian's father Ross, their experience of caring for a child with a rare disease can be described as "Hopeful", "Optimistic", "Learning", and "Determined"

Photography by Julien Behal