Growing up, there was only ever a silent understanding that I had been a patient of Congenital Heart Disease (CHD) as a baby. It wasn’t until later in life that I realised not everyone had a scar running down their chest.

I was diagnosed with the CHDs ‘atrial septal defect (ASD)’ and ‘patent ductus arteriosus (PDA)’, at eight months old, had an open-heart surgery at only 16 months, and officially overcame my heart conditions at 24 months. I didn’t comprehend the implications of the surgeries I had until I was much older. By then, all the medical urgencies, painstaking risks, and surgery scars were fading. I have always said I was too young to have been brave. It was my parents' pain, resilience, and courage that got me through my diagnosis as a baby. For a long time, I saw my lived experience as wholly their story. As an infant patient and a young advocate, my journey towards understanding my personal diagnosis has been an active effort of research and reflection.

I was able to learn more about the lived experiences of other patients with cardiovascular diseases (CVD) and claim my story as a CHD survivor through my introduction to Tiny Hearts of Maldives (THM). Established in 2009, THM is a local NGO dedicated to saving and improving the lives of children with various congenital and cardiovascular conditions. The organisation has become a leading voice for equitable access to paediatric heart care, an advocate for prevention, and a community champion in promoting heart health in the Maldives. Most recently, they introduced a youth advisory board, reflecting their mission to foster youth-led advocacy in community engagement. I feel honoured to have been personally nominated by the co-founders of THM to be a member of this special team, and I strive to honour this role.

Today, CHD remains a prevalent part of the wider burden of NCDs in the Maldives. According to a recent WHO STEPS Survey, CVDs account for 38% of deaths, while NCDs collectively account for 85% of all deaths in the Maldives. Heart disease is the biggest killer in the Maldives and behind these statistics are children, parents, families, and communities learning how to navigate a diagnosis that affects their lives as well as the lives of those who care for them.

My first introduction to THM was as a volunteer during the annual heart health camp in 2015, under their Care for Tiny Hearts Programme. Being surrounded by children and families who faced similar challenges and shared familiar experiences, I realised that my story was not solely mine. Since then, I have participated in awareness campaigns, charity runs, and organised fundraisers for the cause. Working with THM to advocate for people with CHDs has become a significant part of my life that I take immense pride in. As part of their Youth Advisory Board, I look forward to contributing to upcoming projects and promoting the Tiny Heart’s mission. In a small island nation with geographical constraints and limited access to specialist care, finding community has enabled me to connect with other patients and empowered me to embrace my own story too. I learnt how to use my voice with purpose in order to share my personal experiences and help parents of children with CVD recognise parts of their experience in mine. To be able to speak with them in a shared language of raw emotion, strength, and resilience is something that I consider a meaningful privilege.

My involvement with Tiny Hearts of Maldives has changed the way I now see my own scar and the story behind it. I recognise the lived experience it represents, not just of mine and my parents, but of a whole community that helped me understand myself better. I am committed to sharing that lived experience as part of my responsibility to the community and as a way to ensure that other children growing up with heart conditions feel seen, understood, and connected to their own stories too.

As youth, we must challenge the idea that creating change is an act reserved for healthcare professionals and policymakers only. We can educate our peers, start important conversations, participate in community initiatives, and encourage other people to get involved alongside us. Our sustained engagement as a civil society and patient alliance is critical to hold ministries of health, healthcare providers, and academic institutions to account and ensure that national health acts improve and protect heart health across the Maldives.

My first responsibility is to keep speaking. I will continue to use every space available to me, from THM’s Youth Advisory Board and medical camps to awareness programmes, social media, and other youth-led initiatives to make CHD more visible. I want to share my story honestly because I have learned how empowering it can be for young advocates to hear, connect with, and learn from one another’s lived experience. However, meaningful change must extend beyond the advocacy efforts of patients and volunteers alone.

I urge national and global health leaders as well as other stakeholders with decision making power to invest in equitable access to early detection and prevention, strengthen access to specialist care for congenital and cardiovascular conditions, and reduce the financial and geographical barriers that patients face when seeking treatment. It is also essential for healthcare providers and professionals to recognise that access to care extends beyond surgical care; patients and families require continued support through long-term follow-up, rehabilitation, and education. Advancing an inclusive and people-centred health system also demands sustained funding to bring these essential services closer to families in the Maldives.

I feel incredibly grateful to have such a loving support system of family, friends, and fellow colleagues and patients at Tiny Hearts of Maldives. I thank everyone who has encouraged me to share my story. It has led me on a deeply personal path to understanding myself and taught me how to use my lived experience as a way to connect with and help other people. If sharing my story encourages even one person to learn more, support someone else, participate in an awareness programme, or raise their voice for better care, then it has a purpose.