The Story of a Heart is a beautifully written account of how the lives of two families – both facing immeasurable suffering – become inextricably entwined through the donation of a heart from a nine-year-old girl with catastrophic brain injuries to a nine-year-old boy with end-stage heart failure.
First published in 2024, with compassion and clarity, Rachel Clarke draws readers into the details of the lives of Keira Ball’s family, who made the decision to donate her organs when they realised that she wasn’t going to recover from the injuries she suffered in a car crash which also left her brother Bradley and her mother Loanna seriously wounded.
“I couldn’t stop thinking about this story when I first read about it in 2017,” explains Clarke, a palliative care doctor and former broadcast journalist.
The two families had told the story of their meeting to journalist Jeremy Armstrong. This meeting broke all the rules of anonymity, usually sacrosanct in organ donation protocols. It came months after Loanna Ball reached out to Emma Johnson, the mother of Max, after the Ball family received their anonymous letter of thanks.
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In her Facebook message to Johnson, Ball wrote: “I think you may have our daughter’s heart and it’s the most beautiful heart in the world.”
Max’s identity was already public after the Daily Mirror had earlier told the story of his long wait for a heart transplant as part of its campaign for opt-out rather than opt-in legislation for organ donation. (When the legislation for opt-out organ donation was introduced into Britain in May 2020, the law was called Max and Keira’s Law).
Clarke made contact first with Keira’s family, meeting them for several hours, asking them to consider her telling their story. “They immediately said yes, but I gave them a few months to change their minds. When they didn’t change their minds, I approached Max’s family and the NHS Blood and Transplant,” she explains.
Therein began four years of research and interviews with family members and key health professionals who cared for both children and worked on the transplant teams.
The Story of a Heart will bring readers to tears again and again as the details of parents and siblings spending time with their youngest sister before she died are told in parallel to that of a young boy, hanging on by a thread, knowing that he will die without a heart transplant.
In June, Clarke won the 2025 Women’s Prize for Non-Fiction for her extraordinary book. The prize, which complements the long-running Women’s Prize for Fiction, was first awarded in 2024 after research found that female non-fiction writers were less likely to be reviewed (26.5 per cent of non-fiction reviews in national newspapers were allocated to female writers) or win prizes than their male counterparts (one in three prize winners across seven UK non-fiction prizes over the past 10 years were women).
In the story, Clarke writes: “From the moment Keira was fatally injured, her heart began a journey so momentous it was scarcely believable. First, there was the emergency chest compressions at the scene of the crash… Next, the strange metaphysical limbo between life and death as Keira lay in intensive care, warm, flushed, apparently sleeping, yet somehow – unfathomably - brain dead. Then, the moment when her heart was stilled by an anaesthetist’s drugs so that the surgeons, silently at work within the cave of her chest, no longer faced a moving target.
“From there, the light-aircraft dash halfway across the country to deliver the organ, chilled on ice, into gloved and poised surgical hands. Finally, the intricate knitting of the heart’s great vessels into another child’s torso – and the agonising wait to see if its chambers would resume their vital work.”
As well as telling the personal stories so sensitively, Clarke weaves through the book rich details of medical research and history. Such as the origins of intensive care units or the importance of immunosuppressant medicines or how the heart is the first of our organs to form and the last to die. Or how, one in five children die while waiting for an organ transplant.
She also includes details such as how surgeons will sometimes write up operation notes for teddy bears, used for comfort, distraction and to demonstrate to a child certain procedures. And how a nurse can find time to bring a distraught sibling for a hot chocolate while his younger brother lies in hospital close to death.
Clarke draws readers into the lives of these brave and dignified families sharing a time in their lives when they are at their most vulnerable. “How Keira’s family in the darkest, bleakest circumstances can summon all their strength to look outwards to save others from the fate that befell them,” she says.
Keira Ball’s family have since set up the charity, Inspired by Keira, to raise awareness of the importance of organ donation and to support families in the south of England confronting the sudden loss of a child.
And while she chronicles in detail the “the modern day miracle of transplantation” and the hundreds of health professionals who make it happen, Clarke is also cogently aware that more organs are needed to be donated. “When then [UK] prime minster Theresa May brought in the legislation for opt-out organ donations, it was to be called, Max’s Law,” explains Clarke. But, after Max himself said it should be called, Max and Keira’s Law, it was.
Seven years on from his transplant, Max Johnson has just completed his GCSE exams.
Similar legislation to allow opt-out rather than opt-in (ie, assumption that the person agrees to donating their organs unless they have specifically registered their objection to it) was introduced into Ireland in June 2025.
“Changing the law has helped but not as much as people thought. Awareness is what counts. Make sure that you have signed opt-in for organ donation on your driver’s licence and tell loved ones what your wishes are and ask your family members and children what their views are on organ donation,” she says.
Because, in spite of the opt-out legislation now in place in Britain and Ireland, ultimately, it’s the family who decides when facing the death of a loved one. “If that person’s wishes to donate their organs are known, 90 per cent of families will say yes, but if that person’s wishes are not known, only 40 per cent will say yes,” explains Clarke.
Clarke says that studying medicine as a mature student, she has always “cared about patients as people, not just body parts”. She says that she firmly believes stories such as this display such deep humanity, making them an antidote to the depressing newspaper headlines and “doom scrolling” that we all do. “It says something very profound about our species,” she adds.
Clarke now works as a palliative care consultant in a hospital in England. “I knew when I returned to study medicine as a mature student [she was 29 when she left broadcast journalism to train as a doctor] that I wanted to work in oncology, haematology or palliative care,” she explains.
But that didn’t stop her writing. Her first book, Your Life is in My Hands chronicles her life as a junior doctor. Next came, Dear Life, a book exploring death, dying and end-of-life care. And in 2020, she wrote Breathtaking, a book about the first wave of Covid in the UK which was later adapted for a television series.
Clarke says that while being around dying people makes a lot of people nervous, she finds the combination of the physical and moral challenges fulfilling. “End-of-life care is profoundly important. There is a huge amount you can do for people at the end of their life.
“In my work, I see more of the goodness, strength and decency people are capable of. It’s not just the physical complications we have to deal with, but the suffering that comes with having to lose everyone in the world dear to you.”
And, yes, it has influenced her entire philosophy of life. “We are all a whisper away from tragedy. Living your life holding on to just how precious it is is an important way to try to live. We never get enough time to be with the people we love.”
