Lexi | The Bubble Foundation
Donate now
Donate now

Lexi

  • patient
  • not forgotten

Lexi was born in 2011 in Leicester. When she was four years old she was diagnosed with a primary immune deficiency called APDS2. It meant Lexi’s body didn’t make all the immunoglobulin she needed to fight infection. This made sense of all the respiratory infections and coughs Lexi was prone to since birth.  

So in 2015 Lexi started having weekly subcutaneous (under her skin) immunoglobulin replacement at home, given by her mum and dad, which gave her the immune system she needed. With this treatment Lexi was able to live a full and active life, enjoying being part of a dance school, being a Cub Scout and going to school. Lexi loved to travel, she adored animals, cooking, music, big family get togethers and looking after smaller children. 

In 2023 when Lexi was 12 she was referred to the Ward 3 day unit at the Great North Children Hospital for an assessment. It took three days. After a few months the doctors confirmed that a stem cell transplant would be offered. The idea was to give Lexi a replacement immune system, so that Lexi’s body could fight infections without needing additional treatments. Lexi wanted to take the chance of a non-medical life in the future, and also to reduce her chance of complications in later life. The search for a donor started in October 2023.

In April 2024 Lexi and her mum Liz both donated their hair to the Little Princess Trust (who make real hair wigs for children) and raised over £6000 for the Bubble Foundation. Lexi’s dad Andy shaved off his beard at the same time. Lexi knew her hair was likely to fall out so she wanted to make a difference for a child whilst she could. 

After having her central line fitted Lexi went back to Leicester to celebrate her 13th birthday the next day, expecting to come up that weekend and be admitted to the ward. However there was a virus present in Lexi’s lungs so admission was put off until May 18 2024.

Lexi had her transplant on 29 May, living on Ward 3 with her mum. Chemo was tougher than she expected, and she had to have a nasal-gastric tube to get her food and drink, and also TPN down her central line. Her hair fell out and she got very wobbly on her legs. However, Lexi rang the bell and moved to her halfway house after six weeks. Da Andy and sister Ella spent many hours on the M1 commuting up and down at the weekends to see Lexi (if possible) and for Liz and Andy to swap out when Lexi was living in hospital. 

Unfortunately Lexi developed a bad cough and was readmitted to the ward in August 2024. After lots of scans and a lung biopsy, Lexi was found to have developed chronic GvHD in her lungs, where the new cells and the old cells fight each other and cause issues for the host. At one point Lexi’s lung capacity was down to 37% and it was feared she would never have more than 50%. Lexi was started on three treatments simultaneously including weekly ECP, and she worked very hard with a routine of daily nebulisers and lung physio, all of which meant she was able to ring the bell again in October 2024 with a lung capacity over 75%. Lexi was delighted to have her NG tube removed, move to the halfway house again and then finally go home to Leicester on November 18 2024, exactly six months to the day since she was admitted. 

Lexi loved being at home with her cat Bustopher, her mum and dad and her younger sister Ella. Lexi was still living in bubble conditions, not able to go back to school or see friends, and with lots of visits to hospital in Leicester and Newcastle for line care, lung function tests and ECP treatments. There were a lot of medicines to take every day and still nebulisers and lung physio to do. It was a treat to have a family Christmas together at home after lots of time apart during the year. 

We had incredible support from everyone working on Ward 3, and Lexi loved getting to know people, feeling invested in their lives and the stories they would tell about their families, their travels and even engagements and wedding preparations. 

In January 2025 Lexi’s dad Andy took over being primary carer, and Liz went back to work. Over the next few months Lexi experienced various complications including very dry skin and stomach issues, culminating in being readmitted to Ward 3 in Spring 2025. Lexi had an ‘add back’ of additional cells from the same donor in June 2025, but unfortunately in August she contracted an infection in her lungs. Lexi died on the ward on Wednesday 3 September 2025, aged 14.

Andy, Liz, Ella and their whole family and community were devastated by her death, and will forever remember Lexi’s warmth, sense of humour and her bright beaming smile. 

Throughout her time on the ward Lexi benefitted hugely from the support of the Bubble Foundation, from the toys and crafts she loved doing in her room, to the research, equipment and halfway house accommodation also generously supported by the Bubble. She was happy to share her experiences for some of the materials developed for patients and families, and always encouraged the staff in their fundraising efforts.

In her last days, Lexi asked for people to donate to the Bubble Foundation by gifting toys and crafts for children in hospital at her celebration of life. It took two cars to bring them all to Newcastle afterwards! Some people also donated money in her name raising over £2,700 and still counting (January 2026). 

Lexi left a legacy at the hospital, and beyond.

Lexi wanted to work with children in healthcare settings, to make a difference in their lives. She is still doing so in two important ways. 

Lexi's Letter