{"id":1485,"date":"2024-09-29T18:56:14","date_gmt":"2024-09-29T18:56:14","guid":{"rendered":"http:\/\/live-loudly-donate-proudly.org\/?p=1485"},"modified":"2025-07-20T14:59:59","modified_gmt":"2025-07-20T14:59:59","slug":"a-tale-of-two-children-held-in-enduring-love","status":"publish","type":"post","link":"https:\/\/live-loudly-donate-proudly.org\/index.php\/2024\/09\/29\/a-tale-of-two-children-held-in-enduring-love\/","title":{"rendered":"A tale of two children, held in enduring love…"},"content":{"rendered":"

The last day of Organ Donation Week 2024.<\/p>\n

We hope you’ve found something\u00a0that caught attention\u00a0in this week’s variety of campaigning and publicity.\u00a0 If these blogs have been part of it for you then…thank you.<\/p>\n

We know blogs like these are only a foot in the door, starters for the much bigger meal that could be made of organ donation and its breadth of related stories.\u00a0 If you\u00a0are willing to walk in through the door a little\u00a0further, then here’s a way…\u00a0 It’s a book and, for a few more weeks only, an abridged version read by its author is\u00a0available on BBC iPlayer.\u00a0 It was the\u00a0Book of the Week<\/a><\/strong>\u00a0earlier this month.<\/p>\n

\"The<\/p>\n

The Story of a Heart,<\/em>\u00a0by Dr Rachel Clarke, was published on 3rd September 2024.\u00a0 The writer opens her prologue simply,\u00a0“This is the tale of a boy, a girl, and the heart they share.”<\/em>\u00a0 ‘Simply’ could hardly be a more inappropriate word for what follows, and\u00a0her second sentance foreshadows all,\u00a0“It is a story that no one was meant to tell.”<\/em>\u00a0 Not secret, but not what we\u00a0want our lives to include.<\/p>\n

The book, using four years of sensitive interviews and research, and the writer’s own extensive bank of experience as a palliative care doctor, health service campaigner and accomplished writer, opens a window onto the vast world of organ donation and transplantation through the stories of Keira Ball and Max Johnson. With detailed back stories of medical research,\u00a0technology and systems development that make transplants possible, the writer never strays far from those profoundly human stories she announces in her first sentence.<\/p>\n

This is not, nor did it intend to be, a definitive book on organ donation, nor even on one story. There is always more that could be said, or will remain unsaid, intimate, even some (probably very little) already forgotten, overtaken by\u00a0immediate demands. But in the breadth and depth of its content and the compassionate insight and vulnerable, honest humanity of those Rachel has spoken with as she threaded the pearls of this story together, it is as revealing and inspiring a doorway to the subject as could fit between the covers of an accessibly sized book, and grace anyone’s reading list.<\/p>\n

This is not a book review.\u00a0 This reader hasn’t yet reached the last page. Good books are in dialogue with their readers, some will pull them quickly to the last page, racing to find out what happens. This time, we already know the conclusions. It’s the details of the journey that captivate and enthrall. The skill of the writer’s craft may give reason to pause and look twice at the scenery or, as in this reader’s case, it may trigger images, revisiting other experiences, giving reason to do more than pause, and catch breath.<\/p>\n

For some, it will provide a skilful invitation to imagine a situation they’ve never been in, and hope never to experience, a\u00a0journey of empathy\u00a0resourced with\u00a0accuracy and compassion.<\/p>\n

Others may be plunged back into their own experiences of hospital corridors, and small, busy rooms of machines and bleeps, their\u00a0whole being aching to do more\u00a0than seems humanly possible for the one\u00a0they love, now in a hospital gown, sedated, attached by wires and tubes to the mechanics of life-giving care.<\/p>\n

These pages could take both type of reader into hard places.\u00a0 A\u00a0word used, overused, even dreaded, is still one of the\u00a0first words we reach for to describe the journey – rollercoaster.\u00a0 But a rollercoaster as far removed from the fairground fun as it could be.\u00a0 No one needs this kind of adrenilin rush.<\/p>\n

Never flinching from detail, there is some respite when\u00a0Rachel turns her forensic lens onto the\u00a0 background of research, innovation and courageous practice driven usually, not by detached, scientific curiosity but by deep desire to address immediate human need, often arising from direct exposure to personal catastrophe.<\/p>\n

This respite scarcely allows time to\u00a0draw breath before it\u00a0will, in turn, return us to\u00a0one of the two Pediatric Intensive Care Units\u00a0and the extraordinarily focused details of the skill and resources, of love, applied to these two precious children and their families, linked by the story of a single heart.<\/p>\n

Organ Donation Week closes tonight.\u00a0 We know its importance continues, on one side for the thousands on the waiting list and, on the other, for those who will be plunged into\u00a0sudden trauma,\u00a0and a\u00a0choice to consent, or not, to donation.<\/p>\n

If you do find opportunity to listen to, or read, The Story of a Heart<\/em>,\u00a0 you will have still more reason to have those conversations about organ donation…<\/p>\n

Thank you for\u00a0reading this far.\u00a0 Now, back to the next pages of Rachel’s book…<\/p>\n

\"The<\/p>\n

\n","protected":false},"excerpt":{"rendered":"

The last day of Organ Donation Week 2024. We hope you’ve found something\u00a0that caught attention\u00a0in this week’s variety of campaigning and publicity.\u00a0 If these blogs have been part of it for you then…thank you. We know blogs like these are only a foot in the door, starters for the much bigger meal that could be […]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"jetpack_seo_schema_type":"","_wpcom_ai_launchpad_first_post":false,"footnotes":""},"categories":[7,6,8,1],"tags":[],"class_list":["post-1485","post","type-post","status-publish","format-standard","hentry","category-blog","category-news-and-events","category-personal-story","category-uncategorized"],"jetpack_shortlink":"https:\/\/wp.me\/phtpid-nX","jetpack_featured_media_url":"","_links":{"self":[{"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/posts\/1485","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/comments?post=1485"}],"version-history":[{"count":8,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/posts\/1485\/revisions"}],"predecessor-version":[{"id":1496,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/posts\/1485\/revisions\/1496"}],"wp:attachment":[{"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/media?parent=1485"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/categories?post=1485"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/live-loudly-donate-proudly.org\/index.php\/wp-json\/wp\/v2\/tags?post=1485"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}