A dozen years ago, Judi and I were two mums who shared a school run for our boys. Our biggest worry then, was when to give up the drive and allow our two fifth graders Michael and Sam to take the train.
At their first sleepover, we shared that each of our sons had polycystic kidney disease, known as PKD. Michael has ARPKD, which affects one in 20,000 births. Because it’s a recessive disorder there was no sign of it in earlier generations. ARPKD children like Michael, need continuous treatment from birth and before long Judi will be his kidney donor. My Sam, like his 3 siblings has ADPKD. He had a 50% chance of inheriting the gene from his father Michael senior, who was then aged 53 and starting dialysis.
Back then, when our kids were young and still at school, we hoped for some kind of miracle to hold back the future choice of dialysis or transplantation; two mums’ ferocious love compressed into a wordless background hum of constant worry. We imagined raising money for research. Supporting some already established group.