Sophie (17, HLHS)

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When people say, “Tell us something interesting about yourself”, I often wonder what their reaction would be if I were to say, “I have half a heart”…

My name is Sophie, I am seventeen years old, and I have a handmade heart! Before I was born, I was diagnosed with the heart condition, Hypoplastic Left Heart Syndrome, in other words- I have half a heart. Through the process of three operations, the first being at eleven hours old and the final being at three years old, a very talented medical team managed to re-plumb my heart so that it could function without the left ventricle.

When Little Hearts Matter asked me to write this blog, I couldn’t say “yes” fast enough. You see for me, LHM has made me who I am today. It has increased my confidence and has allowed me to understand my condition, as well as giving me the wonderful opportunity to meet other young people like me, many of whom I regard as close friends.

Living with half a heart has its struggles, but before I get into that, let me tell you a little about myself. I’m the youngest in my family. I live with my parents and my two older sisters, Jessica and Rachel.  At the moment, I am studying Psychology, Drama and English Literature A2, which is challenging, but will hopefully be worth it in the end!

I guess I’m your typical teenage girl really- I enjoy music, dancing, acting and of course watching many films on Netflix.

So, what’s it like living with a handmade heart? For the most part, it’s absolutely fine- I just get on with every- day life, and often forget that there’s something wrong with my heart. The main things I have to keep an eye on, is strenuous activity and the cold.

There are certain times when I feel worried or get upset about my heart. Every so often, there are situations where I may not be able to do something, for example go paintballing with my friends, or get my ears pierced. Although on the grand scheme of things, these are minor things to get upset about, it still hurts.

Because I was one of the first children to survive with Hypoplastic Left Heart Syndrome, no one really knows what will happen in the future. I sometimes get worried by this, but then I just tell myself to focus on the present- I recently had my annual check-up, and am pleased to say that all is well! When you think about it, anything can happen in the future, so there’s no point in worrying about it.

I think that my parents often worry more about my heart than I do, but then I guess that’s to be expected. For example, if I go out, my Dad will often say something along the lines of “make sure your friends understand…” But I know that’s something I’ll never have to worry about. From my experience, my friends have mostly, if not always, been completely understanding of my heart condition. This was shown to me so clearly when a few months ago, my sister set up the idea of a “heart selfie”- taking a picture with a heart in it, and donating to LHM. For about two weeks, this was all over Facebook. I was so touched by the great amount of people that took part- it was probably one of the best moments ever, finding out how many people cared about the amazing charity LHM.

I think that in a weird way, having a handmade heart has made me more stubborn as a person. You see, having people tell you throughout your life “you may not be able to do this”, makes you want to prove them wrong. Not by doing anything stupid, but by proving that you can do the activity you set your mind to, but just have to take it more slowly. For example, for so many years, my parents have argued that running may not be the best form of exercise for me. But I knew I could do it.   So, more recently I have been going for a short run a couple of times a week, which I love- not just because it’s good exercise, but because it makes me feel like everyone else.

That’s the thing with having a handmade heart; you have to set your own limitations. Of course when I was younger, my parents made them for me, and I think sometimes they find it hard to see me do it now.

That’s really where Little Hearts Matter comes in. LHM has helped me all throughout my life, like giving me the chance to make friends with people with my condition. But, it has been particularly beneficial in the recent years, where, as I said, it has come the time where I have to set my own limitations. The wonderful charity has helped me understand my heart condition, given me advice on life, and has just been a comfort for whenever I needed it. I would like to take this opportunity to thank the superb team at Little Hearts Matter who, as a small charity, has made a huge impact on my life.

Next year I hope to study psychology at university, in the hope of eventually becoming a clinical psychologist. I know that wherever I end up going, or what job I take, I want to be involved with Little Hearts Matter for as long as possible.

Be social with us - our latest tweets and posts

    Meet Matthew 👋

    He is the oldest Hypoplastic Left Heart Syndrome adult who had the classic Norwood procedure in the UK. We thought the heart-parents out there would love to see this picture, as Matthew is actually one of the children in the 25th anniversary poster that he is stood next to here!

    This one is much more than a Thursday throwback, it’s a glimpse into the future for our heart-heroes as they progress from childhood, to teenage years and then into adulthood. They cannot be cured, but with the right support they can live life to the fullest that their heart will allow, because half a heart does not mean half a life.

    This is where you come in. Because when you purchase a patch on our Visufund blanket, you are giving us the resources we need to continue to support people like Matthew, throughout their half-a-heart journey.

    Make a donation now: visufund.co.uk/lhm-wrap-a-blanket-2

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    11 hours ago  ·  

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    ❤️In our latest family story, Fiona shares her inspiring half-a-heart journey with us;

    “Lucia has grown with the charity that has supported her and our family throughout our half a heart journey. There is always someone from the charity at the end of a phone and we can connect easily with other families via social media. We can never thank them enough for the information and support they provide. Lucia has a very uncertain future ahead of her but one thing we are certain of is the support we have received from the LHM family.”

    ❤️Read Fiona’s story here: bit.ly/35nTucI

    As a non-profit organisation, we can only be there to support families like Fiona’s with your help. When you purchase a patch on our Visfund blanket, you are helping these families receive the care, information and support they need throughout their half-a-heart journey. We are now onto our second blanket, and we are confident you can help us fill it with your wonderful donations and messages!

    Make a donation now: visufund.co.uk/lhm-wrap-a-blanket-2

    Hit the share button and help us spread this message far and wide

    Thank you ❤️
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    1 day ago  ·  

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