The story of Esmée
In December 2022 Esmée became unwell with what appeared to be a sickness bug.
It soon became apparent that this wasn’t just a regular sickness bug, she was yellow, lethargic, vomiting and unable to keep fluids or solids down.
She went to A&E twice but was misdiagnosed for a UTI.
As her condition worsen we called an ambulance and took her to our closest children hospital.
Her kidneys had failed so she was sedated and put on dialysis for 4 days and received multiple blood transfusions . During that time she got diagnosed with aHUS and received her first dose of eculizumab ( soliris ).
Within days she was making miraculous progress!
Since that Esmée hasn’t needed any further dialysis but still receives the medicine via her special button ( portacath ) every 2 weeks !
Her life now is pretty much back to normal, despite the ongoing treatment, she’s back at school and has restarted her swimming and football lessons!
Esmée is extremely lucky to have had such an incredible medical team around her who have saved her life by acting and diagnosing her so fast !
We are the the beginning of our aHUS journey but are grateful for all the help and support available to us