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Hope Makes the Heart Beat!

By  18th September 2014

Hello everybody,

I’m ashamed. I haven’t made a post in.. ummm…well… it’s been so long I can’t even remember. I’ve just started school again and as you can imagine, now that I’m in year 11, homework is definitely a priority.

My family and I recently celebrated something rather special. It’s been 4 long years since my heart transplant. It seems like yesterday I was lying in bed, attached to numerous machines, and my parents got a phone call, late at night, probably the most important and memorable phone call they ever will experience (that is unless they win the lottery and are informed over the phone.) On the 13th of September 2010, something truly remarkable happened, I was saved from death’s doorstep by one very special angel, whom I will never be able to thank properly. I feel so blessed. Many children who are in the same position as I was don’t get the second chance I was given. Sometimes I ask myself: “Why me? Why did I get to live and there are all those children out there who don’t?”

I don’t know whether you believe in God, or angels or good spirits, and I’m not sure if I do either but I do believe in something, I’m not sure what that something is, but something. I’m sure you know what I mean, that moment when something truly inexplicable happens, and you can’t put it down to anything else, except that there maybe a force that has just tipped the balance.

I spent so long in hospital – for my family it almost seemed impossible to hope for a miracle. I had been so ill for so long, what could possibly change that? Although saying that, my parents never did let go of those last glimmers of hope, even in the darkest times. In fact, you could say that it was the hope that encouraged them to struggle through when the future seemed so uncertain and unbearable. All throughout my long stay on PICU, both at the Evelina and the Freeman, I liked to imagine angels around me. If I was lonely or upset, I just thought “My guardian angel is protecting me.” The people who looked after me were incredible (understatement). Angels in their own right, so in a way, angels were always around me. They would reassure my Mummy telling her that when times were tough and things didn’t look great, to imagine me in bed, surround by a circle of beautiful, glowing angels, holding hands, lighting up the dark and depressing side room that I lived in, softly singing and protecting me. It’s a comfort to believe in something like that.

A few weeks ago, on the way home from a hospital appointment (a brilliant one at which we received nothing but good news), Mummy and I were driving along the long dark motor way and we fell into conversation about the past and my being ill. Things got deep (almost sea floor deep) and I asked Mummy a plain and simple question: “How close was I to dying?” (You know, one of those everyday questions a teenager asks her Mum on a daily basis.) I wanted a truthful answer, and that’s what she gave me. She told me that I was as close as close can be. When I was first put on the transplant list, I was originally going to have my transplant at Great Ormond Street hospital. The doctors told us that after my operation, that they would not be able to put me on a form of life support, called ECMO. It was very likely that I was going to need to go on ECMO after the operation, and there was almost no chance that I would survive without it. Again clinging on to what seemed to be the last thread of hope, my parents decided it was the last chance I had. However, a few weeks later I caught an infection and GOSH decide that the risks were to high. They took me off the list.

Hope was gone. I was going to die and there was nothing anybody could do about it. My family and friends prepared for the worst and suddenly, my future didn’t even exist anymore. That is until doctors at the Freeman in Newcastle noticed that my name had been removed from the list. They contacted the Evelina and told them that they wanted to give me a second chance. My name was going to be re-added to the list, but this time, the Freeman were prepared to do anything to save me. And they did. After I was finally blessed with a new heart, I was desperately ill and I was put on ECMO. “I hope I haven’t upset you Cissy.” Mummy was worried that the truth would hurt me. “Its Okay Mummy, I’m alive and well now and thats all that matters.” I truly believe that.

I strongly believe that everything happens for a reason. Great Ormand Street weren’t prepared to go to lengths to save me, and if i’d had my transplant there, theres a 99% chance that I wouldn’t be here today. They took me off the list for a reason. If they hadn’t, the Freeman would never have taken me in. I hope that the wonderful people at the Freeman are reading this now because I can never begin to express my gratitude for the work they did to keep me alive. Each and every single one of them are angels. Brilliant and bright angels who dedicate their lives to giving and caring for sick children.

Of course, I would not be alive it it wasn’t for the person and their family who agreed for their heart to be used for transplant. It is truly remarkable that despite the grief that the family were experiencing, they still were able to think of another. I hope that my donor is looking down on me, and knows that I am inexplicably thankful and that he is in my thoughts continually, he is my hero. My heart goes out to his family who have had to learn to live without their precious child, but I want them to know that his heart still beats strongly and is being looked after and what they did was truly, truly remarkable.

Back to my question at the beginning? “Why did I get to live and there all these children who don’t?” Well, I guess its luck. Surely I can’t feel bad for surviving? But I do, sometimes, especially when I hear of children who weren’t as lucky as me, or families who won’t be as happy as mine. It’s a feeling that I will have to learn to live with, at least until I can safely say that I’m alive for a reason. Hope. Thats what I want to bring to this world. My aim in life is to bring hope to the darkest places and help people in the worst situations, to make a difference, a real difference, and until I have done exactly that, I won’t be satisfied.

I have something very special coming up that I am bursting to tell you all about. I was nominated for a prestigious award by the lovely Emma Orpin and Grainne Walsh. I knew nothing about it until my parents informed that I had actually won! It’s officially know as WellChild and the ceremony is on Monday! (HELP! I haven’t even chosen my outfit yet!) The award I’m receiving is the Inspirational Young Person Award! (Me? Inspirational? Fancy that!) The ceremony is in London at the Hilton Hotel and the guest of honour is… wait for it….. Prince Harry! He’ll be sharing a table with yours truly (I’m totally freaking out!) I will be taking lots of photos and I will certainly be blogging all about it.

I’ll see you soon my lovelies!

Cecilia-Joy xxx

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