I am writing to share our story of our son Luke’s kidney disease—a journey that has stretched over several years. It has been a long, emotional, and often overwhelming experience.
In May 2020 when Luke was 22 years old, he suddenly became unwell. He felt extremely tired, developed a body rash, complained of stomach pains and noticed blood in his urine. Like so many families during the Covid isolation, we found it difficult to get a GP appointment to try and find out what was happening or how serious it might be.
Finally towards the end of the Summer of that year, Luke underwent a kidney biopsy, which confirmed Vasculitis (Henoch–Schönlein Purpura, HSP). We were referred to the Renal Team at The Horton Hospital in Banbury, marking the beginning of a journey we never imagined we would take.
From that point on, Luke began regular blood pressure monitoring, daily medications, and three-monthly hospital appointments. He spent a lot of time asleep as he was so exhausted. It was heart-breaking to watch his energy slowly fade. Over the next couple of years, his blood results fluctuated and medications increased. We tried to live as normally as possible, yet kidney disease always lingered in the background of our lives.
In 2023, during what we expected to be a routine appointment at the Hospital, the possibility of a kidney transplant was first raised. We had hoped Luke’s condition would remain stable for a few more years but suddenly we were facing a reality of transplant and organ donation. Speaking with the Transplant Nurse made everything real. As parents, we were terrified, but we tried to hide our fear to comfort Luke. Sharing the news with our wider family sparked conversations about potential donors.
By summer 2024, family testing began. Luke’s dad (my husband) was a perfect match, giving us a surge of hope—only for it to be devastatingly taken away when he was diagnosed with prostate cancer and could no longer donate. With no other family matches, it was a painful and heartbreaking period for all of us, the search for a donor continued via social media posts with our first post getting 157 shares.
In April 2025, after a trip to America, Luke’s health visibly declined, it became clear that dialysis was necessary sooner than we had feared. During this difficult time, the Peritoneal Dialysis Team at the Churchill Hospital and our Transplant Coordinator were nothing short of amazing. Their kindness, patience, and unwavering support carried us through days that often felt unbearable.
Luke began peritoneal dialysis in June 2025 just after his 27 Birthday. Watching him go through nightly dialysis was utterly heart-breaking. The constant hospital visits, strict dietary restrictions, and fluid limitations took a toll on him as a young adult. Socialising became difficult, and his vibrant energy dimmed. I struggled every day, trying to be strong for him while silently breaking inside.
Although dialysis helped Luke feel a little better, he was still not himself. We joined the paired donor scheme when we realised that a direct match was not going to be possible and in October 2025, we received the incredible news a match had been found. I would donate a kidney to an unknown recipient, and in return, Luke would receive a life-saving kidney – a true lifeline.
