In May 2022, my 13-year-old grandson Ethan was suffering from a chest infection. When he started coughing up small amounts of blood, Ethan’s dad Daniel, who is my son, became concerned. Ethan was so exhausted, not himself at all. He was prescribed antibiotics on a couple of occasions, but they only seemed to make him worse.
Dad Daniel and son Ethan. Credit: Daniel France.
Ethan soon ended up in Hull Royal Infirmary, where he received antibiotics intravenously in the hope it would improve his condition. Two days later, Ethan was bleeding internally, on oxygen and being prepped for an urgent blood transfusion that left him in theatre for many hours as doctors struggled to stabilise him. He was put on life support before being transferred to a hospital in Leicester, well over two hours away from our homes in Humberside.
With his kidneys and lungs filled with blood, Ethan was diagnosed with Granulomatosis with Polyangiitis (GPA), a rare condition where the blood vessels become inflamed. It can cause permanent damage and even be fatal. We were in a state of absolute shock. Our healthy grandson was on the brink of death. It happened so fast.
After two-and-a-half weeks and having made real progress, Ethan was transferred from Leicester to Leeds General Infirmary (LGI). It was closer to home but still almost a 90-minute drive from Hull. He suffered a bleed to the brain while at LGI, which thankfully did not have a lasting effect. It was in Leeds that we first learned about The Sick Children’s Trust charity and their Eckersley House ‘Home from Home’, where families with a seriously ill child being treated in hospital are given a warm, welcoming place to stay, free of charge. It proved to be the most amazing lifeline for Dan, keeping him close to Ethan during his six weeks at LGI, during which time his lungs cleared but his kidneys were failing. It would not be the last time Eckersley House came to aid of our family in their time of need.
Daniel hugs his son, Ethan Credit: Daniel France.
When he returned home, Ethan underwent dialysis three times a week at our local hospital, with the family – including my husband Anthony, who is Dan’s dad and Ethan’s grandad – all rallying around to ensure he could attend these life-saving sessions. Ethan also underwent operations to allow for peritoneal dialysis, a type of dialysis that could be done at home. This stopped after two months due to additional complications, but Ethan’s kidneys had improved enough for him to be placed on a restricted diet until the inevitable transplant took place.
As any dad would, Dan put himself forward as a possible donor, with both me and my brother also being tested. Dan proved to be a perfect match. However, with Dan’s donor kidney having two renal arteries and Ethan’s having just one, the surgeons explained that it was a complicated operation.
Early in December 2023, 15-year-old Ethan’s transplant day had finally arrived, 18 months after his kidney failure. Dan’s operation came first, taking place at St James’s Hospital. The living organ was then rushed across the city to LGI, where Ethan’s operation would take place. Having both our son and grandson in hospital undergoing major operations was stressful for me and Ethan’s grandad. However, thanks once again to The Sick Children’s Trust, we had a place that supported us throughout the entire situation.
Staying at Eckersley House just made everything so much easier. We got to see Ethan a few hours after receiving his dad’s kidney, staying with him until 11pm before taking the five-minute walk back to the ‘Home from Home’. As well as keeping us close to Ethan, we were able to walk across the city to St James’s Hospital to see Dan during his recovery, which was so important to us.
Daniel shortly after undergoing surgery. Credit: Daniel France.
Dan was discharged two days after his operation, returning home to Hull to recover. It was incredibly hard for him, being away from Ethan. However, thanks to Eckersley House, us grandparents could support Ethan in the best possible way. We could be by his side within minutes, as well as using the facilities to wash Ethan’s clothes and make ourselves cups of tea or a bite to eat in the kitchen. The private room gave us a place where we could take stock of everything that was happening and found it helpful to talk to some of the other families staying there facing similar challenges. It was a port in a storm for all of us, a place of refuge from the hospital surrounds. The staff were wonderful too – they couldn’t do enough to help us.
A week after the transplant, Dan was well enough to take our place at Eckersley House. Still recovering himself, he really appreciated the comfy bed. He stayed five nights, by which time Ethan was well enough to return home.
Six weeks on, I’m pleased to say that Ethan is doing well. He has experienced the early stages of organ rejection, but we hope adjustments to his medication have done the trick. It is an ongoing journey, but we are positive, in awe of Ethan’s stoicism. He goes to school as much as he can, sometimes cycling there. He even climbed Mount Snowdon last year in between dialysis sessions. Dan and Ethan are an amazing team, they keep each other going.
As for me, I’m trying to fundraise for Eckersley House. The ladies’ group I belong to recently donated, and I’m planning on hosting a garden plant swap at my home to raise more funds for this incredible cause.
Sue France, Ethan’s nana
Daniel, Ethan and Sue France. Credit: Daniel France.