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Crowdfunding to get my children's book on organ donation into print

englishgirlabroadTransplant Patient
September 2, 2021 in General

This year I am crowdfunding to raise money to get my first children's book, 'Lucy's LiverTransplant – A Story About Organ Donation' into print. It is currently available on the Kindle and translated into eight languages; it's my way of trying to improve education about organ donation and also, in a small way, to pay tribute to my organ donor and her family. 

You can find the crowdfunding page here –

https://www.crowdfunder.co.uk/childrens-books-on-organ-donation

But why did I write this and two other, yet to be published children's books on organ donation?


Well, it's because I believe the best way to encourage organ donation in the world is to educate children about the positive aspect of such a generous act. And how best to do that? Why, children's stories, of course!


In 2016 I lay dying on my parent's sofa. I was a mess. Swollen limbs, round face, feeling horrible, blighted by fatigue, my brain confused and foggy, barely functioning, I struggled on all fronts. But my thoughts were not for my own discomfort and suffering. Instead, what upset me was what my suffering was doing to my family. Even though I had been given my diagnosis at the age of 17, and I was now 31, it was only in these last few months that death really showed its face, and it was terrifying.


No one can prepare you for organ failure, and as anyone who is given a life-changing diagnosis will know, it's not often you Google how painful your demise might be. (You don't look that up or the side effects of medications you are given!) Why would you? Life is a blessing, and for every day, you get your make the most of it.


This does mean that organ failure in its true colours can be a shock. No one should have to go through that. Not if they don't need to. But failing that, let the wait for a replacement organ be short.


For me, it was nine months, and I was lucky. Many wait years. There are no set limits on time, as organs are allocated based on need and suitability. Even when you receive the call to come to the hospital for a transplant, there are no guarantees that the organ will pass all its tests and checks or be suitable for you. There are many 'maybes', and these are only possible after one thing.


A 'yes' from a donor. A 'yes' from the family of a deceased patient'. A 'yes' from a doctor, maybe several members of staff in the end. A 'yes' seems a small thing, but when a family are grieving for their lost member, the role of transplant coordinators is made very challenging. Whether we like it or not, unless the question is reversed, and we are asked, if someone we loved needed an organ, would we accept one? It's hard to immediately empathise with the cause unless you have in some way been directly affected by the predicament.


In the UK, we now have presumed consent, but there is nothing to be 'presumed' about the donation of organs. I've met people who have expressed their distaste for government interference, and many people I know don't discuss organ donation until they meet someone who has encountered it. Why would they? Death is still a subject we avoid, and organ donation with its connotations to it, also.


Children are remarkably open to sensitive subjects and concepts that we give them credit for. Parents are more receptive to discussing organ donation if their children are talking about it.


I knew from personal experience that my education about organ donation had been one line in a science lesson when in reality, it should have been a whole class segment. Asking for organ donation to feature on the national curriculum is a big ask/near impossible due to the complications of policy and bureaucracy. But I genuinely believe stories can transport people and children to other lands and experience things they might not live in their everyday encounters. Stories can educate, stories can change lives, stories can save lives. Because if a child grows up thinking organ donation is normal, talking about it, embracing it, you stand a higher chance of other family members learning about it.


Organ transplants for some people are 'cures', but for many, including myself, a transplant is a treatment. My disease, autoimmune hepatitis type 2, is, at the time of writing, termed as 'incurable'. Every day I take medication to try to stop my body from attacking my liver and rejecting my new organ. I'm not alone in knowing that my organ may not be forever, and I know I want to encourage more people to talk about and actively become donors.


My hope is that through the magic of stories, with 'Lucy's Liver Transplant' being the first of my children's books, children may grow up knowing, thinking about, talking about and supporting the donation of organs and other body parts.


I'm not the first person to write a children's book about this subject, and one day, I hope to bring more writers together to help me spread positive messages about health.


Please, if you can donate to my cause and share it on social media. For every book we can publish, we have a chance of saving a life.

You can find the crowdfunding page here –

https://www.crowdfunder.co.uk/childrens-books-on-organ-donation

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1 - 5 of 5 Replies

  • SigEpSinfonian98Transplant Patient

    This is amazing!!! I will definitely keep up with this and contribute!!

    September 2, 2021
  • ChefAmandaTransplant Patient

    Wow… this is so awesome! Thank you for sharing. I will contribute as well.

    September 5, 2021
  • AliEm14Transplant Patient

    I actually got this book on kindle! I read it to my niece right after my transplant as a way for her to understand what was happening to Auntie.

    September 7, 2021
  • JimGleason_TRIOTransplant Patient

    In a totally different vein, our TRIO (Transplant Recipient's International Organization) patient support organization published a book for children that offers the children of a transplant family member (it's not a book meant for children themselves facing transplant) titled "Mommy Can Play Again" which was created by children of transplant families. While we do offer it free mostly to US transplant programs for their patient families use, it is also available online for either reading online or printing the downloaded PDF version. We are now into the 4th print run of that book.

    You can see it along with the story of its creation at Children's free book: Mommy Can Play Again (trioweb.org)


    September 8, 2021
  • KarinTransplant Patient

    Cool! Both @JimGleason_TRIO ans @englishgirlabroad ! So needed that we educate the young and make it more “normal”.

    kudos!!

    September 9, 2021
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