Evelina London and its school encourage a teen to reach for his dreams

Thursday 1 June 2023

Charlie and his sister, Abbie.

Charlie, age 16, from Epsom in Surrey had a kidney transplant in August last year, after discovering he had end stage renal failure during the pandemic.

He was admitted to the paediatric intensive care unit (PICU) at Evelina London Children's Hospital in October 2021 for specialist care, after he presented at his local hospital with shortness of breath, vomiting and significant breathing difficulties when lying down. After further tests, experts identified his kidneys had failed, which meant he would require dialysis and a kidney transplant.

Charlie's mum, Katie, said: "At the time of finding out about his kidney diagnosis, Charlie had been out of school for 3 years. He has autism, ADHD and anxiety which meant that traditional schooling just wasn't the right thing for Charlie. Having to spend 2 weeks in intensive care and adjusting to this new diagnosis and the reality of needing a transplant was really tough for Charlie and our family."

Following discharge from intensive care, Charlie attended Beach ward 3 to 4 times a week for dialysis.

Katie said: "I was really concerned about Charlie's progress and that his education would be further impacted. The teachers at the Evelina Hospital School learnt of his admission and approached us to discuss his needs, as they knew he would be in hospital a lot and need long-term care. They understood that they would need to tread carefully with him - he had barely left the house for 3 years or had any interaction with others."

Over time, Charlie progressed in his lessons which took place whilst he had his treatment.

"It becomes like home," said Katie. "You get to know the nurses and others on the unit, and the school became integral to his development. The amazing thing I noticed was that everything was tailored to Charlie. They knew he liked cars, so his English lessons would focus on different types of cars, the science lessons focused on the physics of how they work, and to bring in maths, the teachers spoke about gallons of fuel - they personalised everything so that it felt familiar and relevant to him.

"As a parent, there is a real worry about having a child out of school for so long and how this might set them back. There was such comfort in seeing that the teachers were bringing out the best in him."

Charlie's 25-year old sister, Abbie, was identified as a positive match and volunteered to donate her kidney to her brother. "From the moment it was suggested that Charlie might need a kidney transplant, I knew it was something I wanted to do. Charlie has always been one of my favourite people in the world, and I wanted to do everything I could to help him. I was lucky enough to be a match with him, which meant that after lots of tests to make sure me and my kidney were healthy enough, I was able to give him my kidney. My nurse Kristi and the other staff were incredibly supportive. I couldn't have asked for better people to help me through the process."

Abbie's surgery took place in August 2022 at Guy’s Hospital. Her kidney was transported straight over to Evelina London Children's Hospital for Charlie's kidney transplant the same day.

"It was a very difficult day for me and my husband. But quite incredible actually, especially as the kidney started working in Charlie immediately. The surgeons are just amazing" said Katie.

Charlie's transplant was a success and he was discharged in September 2022.

He continues to attend Penguin clinic for regular check-ups to monitor his progress. Grainne Walsh is Charlie's advanced nurse practitioner. She said: "It's hard to put into black and white the complex health challenges Charlie has had to face over the last few years. It's been very evident he has an amazing family who have supported him at every high and low, and there have been many of those! Transplantation is not easy, in particular the first year is tough, but my team and I have been so proud of Charlie as he has continued to handle, and in many ways thrive, over the last 8 months."

Charlie has continued to grow and put on weight and is now on the right path to fulfil his dreams of studying mechanics. He said: "The nurses and teachers at Evelina London helped me through a really difficult time. They supported me so well which helped to give me confidence to work on studying mechanics."

Katie said: "The progress has been astounding, considering where we were a couple of years ago. Family and friends have commented that, despite his diagnosis and setbacks, this journey has been the making of Charlie."

The teachers at the Evelina Hospital school supported Katie and Charlie.

"They attended meetings with the local authority and helped us understand Charlie's level of academic ability. They've really gone above and beyond to help us as a family, not just Charlie. It was a relief to know that we had a team around us that were focused on his education in a way that suited him during this life changing experience. This meant that we as a family could focus on adjusting to the lifestyle changes of his long-term condition. The Evelina School gave Charlie the time and care he needed which gave him the confidence to chase his dreams."

The Evelina London kidney transplant service was the country's first established children's kidney programme, pioneering children's transplantation in 1968. Evelina London Children's Hospital provide over 1,300 specialist dialysis treatments for our patients with long-term kidney conditions every year.

Last updated: October 2023

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