Esmée's Story

In December 2022, Esmée’s mum Betty received a phone call from her school saying that she needed to be collected, as she was complaining of a tummy ache. Esmée was vomiting, unable to keep fluids down, and she had blood in her urine.

Following an initial visit to their local hospital, later that week their local pharmacist advised they should call 999. When the paramedics arrived, the decision was made to take Esmée to the Emergency Department at Sheffield Children’s.

When she arrived, urine samples were taken, and blood tests were done. The results came back and showed that her kidneys had failed. Esmée was then taken to the Intensive Care Unit (ICU) at Sheffield Children’s, where she was sedated, ventilated and put on dialysis.

Betty said: “It was a very scary and horrific time for us but the consultant was so reassuring and professional, so we knew we were in good hands.”

With support from specialists from Nottingham and Newcastle, Esmée was diagnosed with a very rare genetic disease called Atypical Haemolytic Uraemic Syndrome (aHUS). With this condition, antibodies start to attack your cells, which can affect any organ in the body. In Esmée’s case, it was her kidneys; but after diagnosis, she was able to access the life-saving medication Eculizumab. Within days she was able to be taken off filtration while in Sheffield and was transferred to Nottingham to a regular ward.

Esmée was eventually discharged on the 23 December, and was able to have a wonderful Christmas at home with the family. She went back to school full-time and was able to restart swimming and football lessons, while continuing to receive the life-saving medicine every two weeks.

Following Esmée’s care, the family was looking for a way to give back when they heard that family friends Martin and Kirsty were taking on the Yorkshire Three Peaks challenge supporting Sheffield Children’s.

Betty said: “We initially called them crazy until we decided to be crazy too! Then some of our friends and family decided to join us and we became a team of nine!"

The walkers dubbed themselves ‘Team Esmée’ and received donations from friends, family, local football groups and even aHUS patients from as far afield as the USA.

Betty said: “Not only have they saved Esmée’s life, but they also looked after us so well and were amazing support during such a traumatic time.”