In March 2012 Jemima Layzell died of a brain aneurism at Bristol Children’s Hospital at just 13 years of age. The devastation and grief amongst friends and family were understandably profound. However the legacy Jemima left behind, through organ donation and a Charitable Trust set up in her name has ensured she has placed an indelible mark on the lives of many people who never knew her, as well as those who did. Her mother, the writer Sophy Layzell from Horton in Somerset spoke to Seth Dellow about the inspiration Jemima’s short life has bequeathed to those around her.
Finding Jemima’s diaries, with entries right up to the day before she was suddenly struck ill, Sophy decided to put them into a book and use it to help raise money for other children. ‘We felt that because of our experience at Bristol Children’s Hospital, that there were things that we could help with’ she told Seth. She was also driven by a need to use the income from the book responsibly. She and her family realised that there were a lot of children who needed special equipment and special treatment, so the Jemima Layzell Trust was formed to tell her story and spread a positive message about Jemima’s short life.
Just a week before her death, on hearing about the loss of a friend through an accident, Jemima expressed her desire to donate her organs if anything ever happened to her. ‘We also campaign for organ transplant awareness’ says Sophy. ‘Simply because Jemima herself donated all her major organs and again, in children, it’s something that isn’t often talked about. And if Jemima herself hadn’t spoken to us about it, I doubt we’d have been able to be quite so positive in our response. Just because it’s your natural instinct to sort of want to protect your child’s body. But yes, because she’d had this conversation with us, we felt confident that we could agree to hers being transplants.’ In 2017 Jemima was recognised by NHS Blood and Transplant as the person who has helped more lives than any other organ donor in the health service’s history.
Sophy, who was adopted from an orphanage in Laos as a child grew up in Gloucestershire. She remembers how in the mid-seventies ‘it was quite unusual for a blonde white woman to have a little brown baby’. Although she never experienced any negative comments, the connection with her first child was a revelation to her. She recalls looking at her daughter and seeing ‘the same nose, the same skin colour. We had the same knees—and she wasn’t very happy about having my knees. So you know, that was really lovely, to look at someone and actually be able to make that connection with someone, that I never had before, and she was, she was very much a kind of mini-me.’
They were also interested in the same things and she describes Jemima as very conscientious; someone who ‘strived to be the best she could.’ Although they didn’t know what she wanted to do with her life, Jemima had confided to her diary that she didn’t think she would ever grow up. She wanted to become an author. ‘So I think the writing, which had been important, was something that she was thinking of seriously’ says Sophy.
However, her thoughts of never growing up were tragically prophetic. ‘At the time it was quite extraordinary for us because obviously, because of the shock of her death, you sort of wander round the house looking for sort of clues, which sounds a bit silly’ recalls Sophy. ‘You kind of look at everything and think; was there something that we should have seen or realised about before? So yes, going through her things, going through her diaries, yeah, that was quite extraordinary. It gave us an added connection to her that we didn’t have before. It meant that it felt like there was still a conversation going, even though she wasn’t there, and particularly for me, it gave me a real focus that year, so I wasn’t sort of dwelling on the past. I was able to use this material, her words, and give them a purpose and type up all the entries into this book.’
That focus and purpose, along with the help of her other daughter Amelia and husband Harvey allowed Sophy to embark on her own writing career. She cites Jemima and her diaries as part of her inspiration. Along with a friend she attended a drop-in creative writing course in Taunton and found she ‘absolutely loved it.’ She started off just doing exercises ‘and then as time went on I thought actually, I’m just going to write a novel, and then just sat down and did. And that carried on to becoming another one, but it was all very much in snatched time.’ Lockdown changed the way she wrote. ‘I made a decision when I got my publishing deal for the first one, that I was going to do it properly and actually treat it like a job, so write every day even if I didn’t want to.’ In order to force herself to be disciplined, she began blogging; ‘because it forces you to be disciplined. You have to do something at your own set timetable, so I started doing it twice a month. And yeah, it doesn’t feel sort of enforced, it just feels just as though I’m lucky. I have more time rather than just having to cram it in, or do it in the car on the way or waiting while you’re having your tyres changed and all that kind of thing. I can now actually sit down and do it.’
The benefits of writing have been enormous. ‘It takes you away into a completely fictional, fantastic world, and obviously, my creativity has a particular focus of a channel. So last year, I had to stop doing my drama workshops which I’ve done for over 10 years and it seemed a natural way to divert that energy. It’s also, and when I talk about energies, I think a lot of the love I had for Jemima has gone into my writing. They say that a lot of grief is about having lots of love but nowhere to kind of put it, because that person is gone. So this gives me a place to channel it and a lot of my experiences of having lost a child are part of this new woman’s fiction. So yeah, it’s been really cathartic.’
Sophy’s writing tackles emotions that she knows well but at the same time she doesn’t want to push her views at readers. ‘From the young adult trilogy,’ she says, ‘I’m hoping that they will start thinking for themselves about organ transplants. It’s a very important part of the plot and I try not to dictate my feelings. My characters have very divided feelings. So I hope it challenges them to think about that, also about the future of the world because it’s set in the future. I’d like them to think about the impact of rising water levels, water shortages, general famine, disease, how we can start changing our futures in that respect and for the new women’s fiction, Invisible Thread, that’s very different. I just hope people think about their families, their relationships, maybe take a moment just to say “I love you” to children.’
The impact of the loss of a child is unfathomable for all parents, most especially for those that have experienced it. The support of her family and the focus of the Jemima Layzell Trust mean that Sophy can speak authoritatively on the life-saving benefits of organ donation. But she is keen to point out that she is not pushing people to donate. She just wants them to have the conversation. ‘We don’t like to say that you should definitely donate’ she says. ‘I don’t feel that anyone should be under that pressure. I would say, however, make sure you do as much research as you can.’ She simply asks that we ‘keep that conversation going, so your next of kin know exactly how you’re feeling at the time—so that if anything should happen, they’ll know how to represent your wishes.’
Seth Dellow’s full interview with Sophy Layzell is available to listen to on the Marshwood Vale Magazine website.