My little brother Max was a happy, lively boy who loved football, eating sushi, and jumping around playing video games in our living room. When he passed away suddenly in 2015 at age ten, we had no idea what was wrong with him. Hearing the words ‘Hypertrophic Cardiomyopathy’ surprised my parents and myself - Max had had ECGs and echos on his heart in the lead up to his death, but nothing in the results indicated any sort of heart condition.
We came to learn that since he was under the age of 14, his heart was not developed enough to display visible symptoms of HCM until his sudden cardiac death. Since HCM is an inherited condition, I have had to go to yearly appointments to have tests like ECGs, echos, and MRIs to ensure I haven’t developed any indication of the disease. My family and I decided to set up a charity to fund research into inherited heart conditions in young children under the age of 14 called Max’s Foundation. As part of this, we work with Cardiomyopathy UK - and I joined the Youth Panel a few years ago to share my story and help improve services for young people affected by the disease like my brother and myself.
Managing grief while at the same time coming to understand what cardiomyopathy was and how I could be affected by it was the biggest challenge of my life, but with the support of my loved ones, counselling, and creating art and music, I was able to get through it. I believe it made me the person I am today. We remember Max every day, and his love and kindness lives on through the work we do.
I am so happy to be part of the Youth Panel and be able to spread awareness of these conditions, as well as meeting so many other young people with such varied and incredible stories.