Rio’s Story

Rio's journey is one of all heart...

Rio was admitted to hospital after his 3rd presentation to the emergency department on the 9th November 2017 due to reoccurring Gastro. Unfortunately, Rio did not recover and despite 40 nights in hospital, never returned home. Rio’s episode of Gastro and the severe symptoms associated accelerated an underlying condition that Paediatric Doctors informed us they had never seen before. Doctors believed that what Rio was diagnosed with was so rare, he potentially was the first / only child in the world to have it. Pathology and genetics teams worked vigilantly to find answers for us and sent samples overseas to no avail.

Rio was eventually diagnosed with an Arterial Vasculopathy disease / condition. Rio’s arteries failed to supply enough blood to all his major organs and the blood vessels around his body. Despite major aggressive medical intervention, we were eventually told that his condition would progress and his body would progressively shut down.

During his time in hospital Rio survived 5 major surgeries, including 2 amputations (high thigh and hindquarter amputations), kidney (renal) failure, heart impairment / failure, and consistently high blood pressure levels (peaking at 225 systolic over 150 diastolic); to then only be told that he had a terminal condition due to his arterial malformations.

Though his condition was diagnosed as terminal, Rio continued to inspire us all with his smile, fight and will to never give up. He made the most of every moment, engaging in play, dancing and asking for chocolate when he was well enough. From Christmas 2017 onwards, Rio’s condition continued to deteriorate and after being transferred to The Bear Cottage, Manly NSW Australia, which is an end of life / respite hospice for Children, Rio’s courageous and brave fight came to end on the 15th January 2018. He was a beautiful little boy who will be forever loved and dearly missed.

Rest in Peace

Rio James Fowler

21/07/2016 - 15/01/2018