Filmmaker Sam Clarke, from Reading, was born with Alport syndrome, a rare genetic disorder affecting the kidney’s filtration system. When Sam was ten years old, a doctor told him that having Alport syndrome was akin to living with a “time bomb” – ill-chosen words which Sam says had a devastating effect on his young life.
“Those words – ‘time bomb’ – became my focus and I immediately began to catastrophise. I thought that when my kidneys failed, my life would be over,” says Sam, whose uncle on his mother’s side of the family also has Alport syndrome. “From then on, I was constantly thinking, ‘Why me?’
“At school I used humour to cover up my fears, but the anxiety that was flowing underneath was intense. When I was offered hearing aids at 15, I refused to wear them as I didn’t want to be bullied. Not even my close friends knew I had kidney disease and later in life I kept it quiet from my bosses at work.”
But in 2019, Sam decided he’d had enough of living in fear and in May that year he set off on a life-changing adventure. His aim was to cycle 6,000 miles across Europe, skydiving in each country he passed through, with a goal of raising £20k for charity.
“The year before, I was very ill mentally. I was in a dark place and struggling,” says Sam, 35. “Finally I said, ‘I can’t continue like this. I need to know more people with Alport syndrome.’
“I got in touch with Alport UK and Susie Gear, who runs the charity, helped dig me out of a hole. I found myself inspired by what the charity was doing and that, combined with covering inspirational stories in my work as a documentary maker, led me to my big cycling adventure.”
In 2023 Sam, who has never been on dialysis, had to face the reality that his kidneys were finally failing.
“After lockdown it just became a steady, slow decline and I realised I’d need a transplant this year,” he says. “My dad, an absolute legend, was found to be a match and on 22 September I had surgery.”
Despite the transplant being a success, Sam needed a further operation to clear a haematoma in one of the kidney’s arteries two days later. Thankfully he recovered well, although he says his new kidney is still a little “sleepy”. His father Mike, 67, has made an excellent recovery.
