The Little Hearts Matter team has been working to create new member stories, to shine a light on life with half a working heart. Every journey is different, so every voice truly matters. We recently caught up with Jason, one of our SVH adult members.
Jason Wright is 23 and lives with HLHS, he has completed all three stages of treatment.
Hi Jason, it’s been a little while, what have you been up to since our last catch up?
Where to start! Biggest thing to tell you is that I have moved out of my mums in April and I’m now living in my own flat. I have some pet fish to keep me busy and I’m just down the road from mums if I need her. It’s fun having more freedom (even if it means doing all the lovely chores myself).
We love your artwork. What is the story there?
My art has progressed from doodling in school books, to making Disney fan art, to now creating my own universe of characters called Apples. The Apples are inspired by things that I enjoy, but I also want to use art to raise awareness for things like health issues and bullying. Currently working on a new animation so keep your eye out for that!
What does your heart condition mean to you?
It means that you will never catch me on the big jolty rides at the fairground because it’s not safe for my ticker. BUT you will catch me at the fairground having fun on something else. Having a heart condition is serious but it doesn’t have to define me or stop me from having a laugh!
If you meet someone for the very first time, how would you explain your heart condition to them?
This is a cool life hack I came up with, I describe my heart condition like I’m the reverse of Doctor Who. He has two hearts and I have only half a working one! We are both epic in our own way. Adding a bit of humour seems to put people at ease and help them understand things a bit easier than throwing all the medical jargon at them!
So you have been through a lot of surgery, what are your earliest memories of those experiences?
To be honest I don’t have vivid memories of being at the hospital, probably because I was so young, but I do remember my mum saying that scars are like a zipper, because some people need easy access to get their batteries repaired. I remember that being quite comforting.
How are the hospitals visits as an adult patient now?
My surgeries were done at Great Ormond Street but I’m at Birmingham QE now, I go for a few checkups every year. I just try to get on with it but I must say that I am not a huge fan of the look or smell of the hospital. I’m needle-phobic too. These things have probably followed me since I was a kid.
What is your message to the younger ones with half a working heart?
Embrace you for you and don’t let other people get you down. It can be real tough but it’s okay to admit that. Find a passion or do something creative. Making art has helped me for many years and now I couldn’t live without it.
https://apples2013official.wixsite.com/jason-r-a-wright – Jason’s Website
https://applesoffical.wixsite.com/jasonrawright – The Apples Gang Official Website