This year I am crowdfunding to raise money to get my first children’s book, ‘Lucy’s Liver Transplant – 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
In 2017 I barely survived a last-gasp Liver transplant. The team waiting to undertake the long hoped-for transplant procedure were severely hampered by the shortage of suitable donor organs and particularly in finding a match for my blood and tissue types.
Luckily for me, a donor organ match was found; and my life saved.
In recuperation, I discovered that the one obstacle to patients receiving timely transplants is the shortage of donor organs and that registered donors are still few in number. Alongside which, a lack of discussion at home can mean that at the crucial time the deceased wishes to donate may be overlooked. It was then I vowed to bring about a change.
My campaign to raise awareness through Articles, Schools presentations, News and Radio interviews across the South has been widely supported and encouraged and gave rise to a personal Transplant blog, further educational articles and the first of my three books for Children aimed at de-stigmatising and de-mystifying the myths, issues and challenges encountered by families compelled by fate to engage with the whole organ transplant issue.
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. I struggled on all fronts with swollen limbs, round face, feeling horrible, blighted by fatigue, my brain confused and foggy, barely functioning. 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.
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A ‘yes’ from a donor. A ‘yes’ from the family of a deceased patient’. 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.
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. And 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.
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