Olympic rowers reveal 'THE RARE DISEASE THAT CHANGED OUR LIVES'

Cambridge sporting couple Louise and John open up about the diagnosis that plunged their family into crisis

- Dionne Christian

On a Wednesday morning in March 2021, Louise Storey, a champion rower who represented New Zealand at the London Olympics and several World Championships, pulled into a car park next to a Cambridge petrol station for a phone call that would change her family’s life.

Louise (née Trappitt) had dropped daughter Ava, then two, at day care and was preparing to head for a scan that afternoon to see how her second pregnancy was progressing. Her husband, fellow Olympic rower John Storey, was training at Lake Karāpiro and was to join her later at the scan.

The call was from a paediatrician who matter-of-factly informed Louise that Ava had a rare chromosomal disorder – 1p36 deletion syndrome. Pamphlets and information documents were emailed through. Grappling with the news, the couple later headed to the scan.

“I remember not being able to feel any joy because of what we had just been told,” says Louise, 37. “We went into see the paediatrician, who ordered blood tests, but these were later cancelled by the geneticist because he didn’t think we had anything to worry about because 1p36 deletion syndrome is so rare. It’s just one of those random things.”

Two years on, at the home they’re temporarily sharing with Louise’s parents Ann and Dave, the couple – now also parents to 18-month-old Briar – sits on the couch to reflect on how life has changed since Ava’s arrival four years ago.