Danny's journey with his rare conditions began after his birth following a healthy and easy pregnancy for Carol. Carol and her husband were overjoyed at his arrival but soon thrown into uncertainty as he became unwell on his first night and was rushed to hospital. So began a series of challenging and traumatising health events including undergoing open-heart surgery at an early age. However, he continues to inspire with his resilience and zest for life. His non-verbal communication skills, enhanced by the use of Lamh and an Augmentative and Alternative Communication Device, are a testament to his adaptability and determination.
His mother, Carol, has taken the role of a full-time carer for Danny, providing him with the necessary support and care. Carol is an active member of the SWAN community and Rare Ireland, advocating for increased awareness and understanding of rare diseases. She hopes her efforts will inspire others living with a rare disease to speak up and share their stories.
The words "Determined", "Unpredictable", "Hopeful", and "Resilient" perfectly encapsulate Carol and Danny's experience with his rare condition.
Photography by Julien Behal
