Sara O’Brien’s life changed forever when her son Charlie was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a single ventricle heart condition where there’s a collection of abnormalities on the left side of the heart. This antenatal diagnosis, delivered at a 20-week scan, marked the beginning of a journey filled with both immense challenges and extraordinary moments of hope. Yet, despite the fear and uncertainty, Sara and her family have found ways to cope. Charlie’s story is not just about living with half a heart; it’s about the voice he has found, the strength of sibling togetherness, and the unwavering support of a family that has stood by him every step of the way.

Charlie’s condition required immediate and ongoing medical interventions, including multiple open-heart surgeries. The early days were the hardest, with Sara spending a lot of time in hospital, watching over Charlie. From managing hospital appointments to coping with the emotional toll of watching their son undergo surgery, the journey has not been easy. To help manage the stress, Sara has turned to journaling. Writing about their experiences has allowed her to process the emotional challenges and record precious moments that define Charlie’s resilience. Sara and her husband have kept hospital diaries, documenting every admission, every procedure, and every milestone. They serve as a source of comfort and reflection during times of uncertainty and a reminder of how far Charlie has come. To cope with the emotional toll, Sara turned to journaling—an outlet that allowed her to process her challenges she faces with Charlie at the hospital and the day-to-day realities of Charlie’s HLHS condition day to day.

Despite his medical challenges, Charlie has not let HLHS define his entire life. His love for music, particularly playing the guitar and singing, has become one of his greatest passions. Attending music festivals in their camper van, Charlie’s enthusiasm for live performances reflects his desire to live life fully. Whether it’s mimicking his favourite artists like Ed Sheeran or Scottish singer Nathan Evans, Charlie’s love for music brings joy not only to him but also to his family.

Charlie’s older brother has been a pillar of support, offering companionship and solidarity. The bond between the two brothers is strong, and Charlie looks up to his big brother with admiration. Together, they found a way to channel their energy and make a difference in their community by becoming involved in local council protests. These protests were aimed at protecting their local parks, green spaces and ensuring that their school’s additional needs hub, which both boys relied on, remained fully supported —an issue close to Charlie’s heart, given his love for the environment.

Sara watched with pride as her sons stood side by side, voicing their concerns and standing up for a cause they believed in. Sara says “Even though he goes through his challenges, he is very good at telling his classmates and his friends about his heart condition. He’s quite proud of it”. For Charlie, these moments were not just about the environment; they were about taking control of his world in the small ways he could, a powerful statement from a young boy who had already faced so much.

As Sara reflects on their journey, she acknowledges the challenges but also celebrates the victories, both big and small. Charlie’s survival, his love for animals, and his participation in community activism are all triumphs that Sara holds close to her heart. These achievements are not just milestones in Charlie’s life; they are reminders of the incredible strength and resilience that both mother and son have shown.

Sara’s and Charlie’s story is one of strength and the power of finding hope in the most unexpected places. Through her journaling, Sara has not only documented their journey but has also created a legacy of determination that will inspire others facing similar challenges. It’s a reminder that having half a heart does not mean living half a life.

As a last word of encouragement to the LHM family, Sara says “We’re all here to support each other. And always ask questions, even if you don’t need to ask, ask questions and get as much information as possible. These kids can, you know, get on with a lot more than what people think, really. Just because they only have half a working heart doesn’t mean that they have half a life.”