Carol Fleming

My name is Carol. I am from a village called Drangan in South Tipperary, Ireland. I am a full-time carer to my son Danny, who is medically complex and was born in 2014 with OCNDS, but was only diagnosed in 2024. I also have a little girl, Willow. I feel very passionate about advocating for rare disease and shining a light on the battles we face. After nine years of searching for answers, it has been a huge sense of relief to finally know and to be able to chat to other parents going through similar experiences. I am so happy to be chosen to be part of the Parent Advisory Board for the CSNK2A1 Foundation. I hope that sharing our lived experience and knowledge of OCNDS will have a positive impact. In my spare time, I love to run—from road races to cross-country running with my local athletic club.