How Lexi's Letter was written - by Lexi's mum

At the end of December 2024 I was sat in a windowless room in a hospital with my eldest daughter Lexi, then aged 13. We were sitting on a blue sofa, surrounded by the kind of generic lavender field mural you get in windowless hospital rooms. 

Lexi was having a bad day. For a start, she didn’t want to be in hospital that day, or in fact any day. Earlier in 2024 Lexi had a stem cell transplant and had lived in hospital for months. Now at home but coming in regularly for treatments and tests, Lexi was fed up. Lexi was also 13, with all that entails. 

We were in the hospital room so that Lexi could receive two units of blood, prior to going to another hospital the next day for more treatment. Lexi had had many units of blood during 2024, and wasn’t worried about it (not the least as it could go in via her central line so no needles required) but she wanted it done as quickly as possible so she could go home.

For various reasons, it took ages to get the blood onto the ward and then into Lexi. I watched as she got more and more frustrated and withdrew further into herself. We both knew it wasn’t anyone’s deliberate plan for it to take this long, and we could see everyone involved working hard. But for Lexi - and therefore, by extension, for me- it was frustrating. 

As I looked at Lexi, I suddenly heard myself say- shall we write a letter? Lexi rolled her eyes at me (I did mention that she was 13), but listened as I explained. I said, why don’t we write a letter from you to all healthcare professionals, telling them what you want them to know about how it feels to be a long term patient as a young person? She agreed, and she started telling me things to include as I started scribbling. I got down her ideas and then through the rest of the time in the room we talked about all the experiences Lexi had had, and what she wanted people to know. 

Lexi wanted to work in healthcare, and with children and young people especially. Throughout her time in hospital I saw this in two ways- firstly a deep interest in the wellbeing of other children undergoing treatment, and secondly a continuous curiosity about the working lives of the many healthcare professionals she met. Her words came from that place of care and respect. 

Once the letter was written Lexi asked me to share it on the private blog we had set up for all our nearest and dearest who were following Lexi’s progress. I did that and thought no more. But of course the people reading the blog are not just our friends and family. They all have lives and expertise, including, had I thought of it, in healthcare. Several people encouraged us to share it further, talking about the power of Lexi’s words. Through that personal connection, Touch Design offered to make Lexi’s Letter into an animation. We didn’t initially understand why, but followed their advice with gratitude.

This gave Lexi an amazing opportunity: to be the creative director as her words were given a visual representation. She started by building a mood board of animation styles and colours that she liked, which the team made into a couple of options. Once Lexi had chosen the team started developing the animation. All of this happened whilst Lexi was readmitted to hospital for yet more treatment, and was something that she really enjoyed doing. 

Lexi died in hospital on 3 September 2025. She didn’t get to see the whole animation completely finished, but she saw the first half after a heroic effort by the team. The day before she died, she watched it quietly and nodded. That’s good, she said. 

Six months later as we continue to grapple with our grief I am so grateful for Lexi’s Letter. It was finally completed and voiced by Lexi’s younger sister Ella, and now stands as a lasting legacy for us all. We’re grateful to have a way to share Lexi’s views and experiences with people, and it’s wonderful to hear the impact it has when people watch it. 

Please get in touch if you would like to use the animation and poster, created as a patient experience development resource, to help inspire positive change for patients. Organisations may wish to create different formats for Lexi’s words, but please do not change Lexi’s words or attribute them to anyone else. We would love to know how you use Lexi’s Letter within your organisation and any feedback on its impact.

Please use the hashtag #LexisLetter on any social media platforms.