Hugo Taheny is a Rockstar. Not because he’s a famous musician – even though he IS a truly inspirational advocate for people with disabilities and also an elite athlete in his spare time! But as Hugo’s mum, Louise Taheny explains, in this truly inspirational Episode #124 of the Flying Doctor Podcast, her youngest son’s Rockstar status actually stems from him having ‘quite the scar’, across his entire chest.
But this is also the story of Hugo's incredible family. The story of how Louise dealt with the life-changing repercussions of her husband's debilitating stroke in 2015 – facing each day with the same courage and resilience she drew upon during Hugo’s infant years, when RFDS flights and urgent medical appointments were a regular feature of her family’s life. And it is a tale of the incredible courage and resilience shown by Louise and John, when their older son Will, became a quadriplegic after a devastating car accident in 2022.
As the youngest of five children, Hugo was born at 37 weeks at Yorktown Hospital in SA. But as Louise held her baby boy in her arms, she immediately had a feeling that something was ‘different’. Three days later, after a core blood was sent to Adelaide for testing, Hugo was officially diagnosed with Down Syndrome - a condition caused by a random error in cell division that results in an extra copy of chromosome 21. But this would only mark the beginning of Hugo’s health journey. Doctors quickly realised that Hugo’s heart was not fully formed – a life-threatening condition known as Atrial Ventricular Septal Defect. Louise soon learned that Hugo was also legally blind, hearing-impaired and immunosuppressed.
What followed was nearly two years of Hugo ‘failing to thrive’ and being fed through a nasal gastric tube, as Doctors waited for him to become strong enough for the cardiac surgery he needed to survive.
Then, in the middle of a busy crop seeding in 2015, Louise took a heartbreaking phone call. Her son Tom told her, ‘I think Dad might be having a stroke, I can’t understand what he’s trying to say, and he can’t get over the fence’. John spent six months undergoing intensive rehab in Adelaide with Louise by his side, while their eldest children, Edwina and Tom, left University to return home and care for their younger siblings on the farm. John’s life was forever changed and the fit and hardworking farmer could no longer work the land he loves.
Then, during the pandemic in 2022, they were dealt another blow, when their sports-loving son Will, 23, was a back-seat passenger in a shocking crash not far from the family farm. Will sustained a devastating spinal cord injury and spent 216 days in ICU and then in the spinal rehab unit. Louise didn’t come home for four months. Today, both Hugo and Will compete at a National level sports (Hugo in athletics and Will in Wheelchair Rugby) and Hugo is an inspirational mentor and health ambassador for Down Syndrome Australia.
