I was born on the 24th of October in 1996 with Hypoplastic Left Heart Syndrome.I had my first operation at 4 days old, then at 6 months old and my last (so far) at 3 years old. From what I can remember which is not much at all, my operations went well and I would consider myself as a healthy human being, just with a handmade heart.
I should really introduce myself, my name is Evie, I am 18 years old (just recently) and I live in a little village upon the moor in Cornwall.
I’m not the typical cornish girl who has long blonde hair, is extremely thin and surfs every day even in winter. Instead I am that girl who sits in on her bed and watches youtube. even though I do have blonde hair, and it is getting longer..I am now looking at uni’s and I will definitely be leaving Cornwall and making my way to the city. I am looking at Bimm in Bristol which is a music based university. The course I am looking to do is events management within the music industry. It is a full time course and I CANNOT WAIT!
As I have also pointed out I am now 18. I am now able to go out but I also know that I will now need to be a little more careful with myself.
Having a handmade heart obviously has its ups and downs when trying to live a normal lifestyle. Being a teenager I of course love to socialise and especially enjoy a good gathering with my girls. But of course I have limitations unlike my friends. I do find it hard when I see my friends drinking and knowing that I can’t join in to the extent that they do it. But I also find it absolutely hilarious watching them throughout the night when I’m the only sober one.
This summer I went to a small festival, it was a great weekend and I enjoyed every second of it. But it definitely took its toll. I had to have a nap there in the afternoon whilst all my friends went down to listen to the music and the week after I was very tired and having to go to bed very early. My friends are really great they understand that I need to be more aware when going out and they like to keep a watchful eye on me.
I admit I am quite scared about going to University. This will be a big change to my lifestyle and to me. I will be meeting new people and doing new day to day activities.
Even though I am looking forward to meeting new people, I haven’t worked out a way of telling them about my condition. It’s always a scary thing to do and I always wait till I’m comfortable with that certain person before I tell them. But with freshers being in the first few weeks I know that I will need to tell them sooner. I’m sure when I’m there it will be easy to tell them and I need to stop getting myself wound up about it.
But for now I am still at college in Camborne. It is quite a small college so there isn’t a lot of walking around the campus for me which is a positive.
I am studying music production 3 days a week and working at a lovely cafe in my village on the weekend. Going to college 3 days a week has been really good for me over the past year and a bit as I have been able to have rest days before working on the weekend. As I have to drive to college which is about an hours drive there I get very tired in the evenings. I just want to go to bed as soon as I get through the door. But as it’s only those 3 days in the week as I keep saying, I don’t mind.
I have just had my yearly check up in Bristol and it was brilliant. I am well and there’s nothing that I need or they need to worry about. Having the yearly ‘all clear’ is such a good feeling, knowing that my little heart is still working as well as it should be is great. I like to celebrate with a good clothes shop in Bristol after.
I guess I could say I am quite grateful in some aspects to have my handmade heart as it introduced me to some amazing people which I would class a few as my closest friends and has also brought me to be part of an amazing charity. Little Hearts Matter has supported me and taught me that I can live a normal life. Because what is normal nowadays???
It’s been a few years since shared her story, so she’s kindly given us an update on where she is now in 2018.
2018 has already been a massive milestone year for me. Not only have I completed my three year degree in Event Management at Brighton, I’ve opened my own business serving coffee and breakfast every morning to campers staying on the family farm back in Cornwall. I also now work down at The Eden Project as-well as enjoying my summer being free from university deadlines forever. I will be graduating at the end of September and look forward to what could be in the future.