Russell’s brother, Dan, had facioscapulohumeral muscular dystrophy (FSHD) and was 38 when he passed away earlier this year. Dan’s family found an unexpected comfort when they learned Dan’s organs could be donated. For National Transplant Week, Russell shares memories of his brother, how and why they decided to donate Dan’s organs, and what this meant to their family during a devastating time.
“My brother saved two lives by donating his organs when he passed away.”
Dan wasn’t just my brother; he was one of my best mates. He loved cricket, cooking, and nature, but most of all, he loved helping people. I’d call him every other night just to chat about life and hear his voice. Devastated doesn’t even begin to cover how we felt when he passed away.
I’d never really thought about Dan being able to donate his organs; it’s not something we spoke about in our house, and I suppose I assumed he wouldn’t be able to do so because of his condition. But when the hospital asked us if Dan had ever mentioned his wishes regarding this, we knew that if it was possible, Dan would want to help others in whatever way he could. Being able to donate Dan’s kidneys to people who really needed them, and his other organs to research, has given us an unexpected source of comfort through such a hard time. I hope that by sharing my family’s story, other people in the community realise they can sign up for organ donation.
Dan brought happiness to everyone’s lives
Dan was just 17 when he started showing signs of his condition. At first, we just thought he was a bit clumsy. He’d always been such an active lad; loved playing cricket and messing about outdoors. No one suspected the reason behind the clumsiness would be so serious, until he was diagnosed with FSHD.
For a while he was able to mostly carry on as normal. He trained and worked as a chef and loved his profession. He looked after his body as much as possible by going to the gym with the help of a great trainer and physio. But by the age of 25, he knew he couldn’t keep working. His body just wasn’t allowing it anymore. When he stopped working, our parents built a room for him downstairs in the family home.
Dan was always in pain, always fatigued, but he never let that define him. He absolutely loved helping people and had a great sense of humour. He had this incredibly caring, understanding way of looking at the world.
“Over the years, he became known as the mobile village counsellor in his area, as he gave great advice and was always happy to offer a listening ear.”
He’d drive all over, using his specially adapted car with hand controls, just to visit people. That car was his lifeline. It gave him a sense of freedom and independence even as his condition worsened.
A small light in a very dark tunnel
On that day that came too soon, the ambulance crew managed to restart Dan’s heart after over an hour of trying, but the damage was too much. After three days in the hospital, we were told Dan was brain dead.
Dan hadn’t signed up as an organ donor, but he hadn’t opted out either. I remember him once saying something about ‘who would want my organs;’ because of his muscular dystrophy he assumed it wouldn’t be possible. But when the hospital said he may be able to, we had to make the decision as a family. And honestly, we didn’t hesitate. Helping people was what Dan was all about. It just felt right. That, to us, is Dan’s legacy.
Two of his kidneys were successfully transplanted, and we were able to say we were happy for the people that received the kidneys to get in touch if they’d like to. The rest of his organs have gone to medical research.
“We’ve found an unexpected light in that decision. Knowing he has helped others — knowing there are people alive today because of him — gives us comfort. It gives us purpose in our grief.”
I remember collecting a national award in London years ago, with my dad proudly watching from the audience. After Dan passed, our dad said he felt just as much pride saying goodbye to Dan before the organ retrieval as he did on that award night. That kind of pride and love is difficult to describe, but it brought us together in one of the hardest moments of our lives.
Learning to live with the grief
When Dan passed away, he left a hole in so many of our lives. Our mum had devoted her life to caring for Dan, and I will never forget the strength and love she gave him every single day. He also left behind his soulmate, Kiana, and her son, who Dan raised like his own from when he was just three months old. But the way he lived; his humour, kindness, and resilience, continues to shape us all.
Not a day goes by that I don’t miss him. But he didn’t just leave us — he gave life to others. And he gave us a story of courage and connection that I’ll carry with me forever.
