Helena’s HLHS Story

“I’m Helena, and I have Hypoplastic Left Heart Syndrome.”

“Having a congenital heart condition has been challenging for both me and my family. Since day one, nothing has ever felt straight forward when it comes to my health, it has also had a huge impact on my mental health, so I felt it was important to raise awareness by sharing my story.”

“My heart condition has a big impact on my energy levels and my ability to do day-to-day tasks. I start the day with about half the energy of an “average” person, which really restricts what I can do. This makes me feel very lonely, isolated and lost, because I have to sit out 9 times out of 10.”

“Constantly being mindful of my energy levels is exhausting, I am worried and anxious, asking myself “what if” I make myself tired, so I have to be very cautious. Not only do I feel a large amount of anxiety from that situation, I have also faced a lot of PTSD from my past traumas from hospital.”

Little Hearts Matter have stepped in massively and have helped me overcome hurdles in my HLHS journey and my mental health journey too. When I joined the Little Hearts Matter youth group chat it made me see life in a better light. They all supported me whenever I was feeling not the best and helped me to feel a lot happier again.”

“All of them made me feel safe and wanted and made me feel as if my feelings and emotions were wanted and were important which helped masses of amounts. Lexie the boss and Suzie the big boss of the LHM youth chat also equally helped me in my mental health journey too and I couldn’t thank everyone enough.”

“Before I joined the youth group chat I didn’t know anyone who had the same condition as me or similar but now I know so many who do and that in itself definitely helped me come out of my shell and made me feel more accepted. I have truly made friends for life from the Little Hearts Matter youth group chat and even though I am still battling my mental health alongside my heart condition I have a safe community within LHM that makes me feel content with my life.”

We just wanted to say a huge thank you to Helena for sharing your story with us and helping us raise awareness for the challenges faced by teenagers living with half a working heart. We are so happy that the LHM Youth Services have supported you.