Arky's Story

One of the very special moments at this year's Hospice Waikato & Montana Food and Events Bucket List Banquet was sharing the story of Arky and his whānau and we are honoured to share their story with our wider community. If you missed the event, or would like to watch it again, you can view Arky's story below.

Arky was born eight weeks early, weighing just three pounds. Diagnosed with CHARGE syndrome and Congenital Athymia, he was unable to develop an immune system and spent the first two years of his life in hospital fighting to survive.  Against extraordinary odds, Arky was given the opportunity to undergo a rare, lifesaving treatment at Great Ormond Street Hospital in London. Travelling during the Covid pandemic with his mum, Erin, and dedicated medical support, the treatment gave his body the ability to fight infection for the first time.  As Arky's health stabilised, Rainbow Place became part of the family's journey.  Our Clinical Nurse Manager, Lauren Fenn, and her team worked alongside Erin, helping her gain the skills and confidence needed to manage Arky's complex care at home. Together, they navigated everything from daily care routines to essential procedures such as tracheostomy changes and supporting the family's transition from hospital to home. 

Today, Arky is six-and-a-half years old and surrounded by extraordinary love. His story is one of courage, resilience and the power of care, community and family.  We invite you to watch the video to learn more about the remarkable young boy who captured the hearts of everyone at this year's Bucket List Banquet.