Oliver Tapp and his Genetic Journey

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Oliver Tapp and his Genetic Journey

Hi, my name is Brad Tapp and this is my gentle, cheeky and resilient son Oliver. He loves serving side-eye, hand-holding, wiggling to music and anything the colour purple.


Oliver was born with an incredibly rare abnormality in his genetic makeup. Due to this he suffers from an undiagnosed variant of Muscular Dystrophy.

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Oliver (or as he's affectionately known, Ollie, Olbol, Olbs, Olby or Mr. Coconut) is 2.5 years old, born on the 20th of December, 2022 in Burnie, Tasmania. His birth was normal at 39 weeks and was reaching his milestones up until he was 8-10 months old.


During and after consecutive illnesses (croup, Covid, RSV) Ollie began to regress. He went from cruising, back to crawling, crawling back to rolling until eventually, after suffering a severe collection of respiratory illnesses he had lost all independent mobility completely.


Ollie has been in and out of hospital with both planned and unplanned visits. On three occasions he has been flown, both by helicopter and plane from Burnie Hospital, to the Royal Hobart Hospital. The first time he was flown was in November 2024, the second in February 2025, and the third in June 2025.




On the 20th of June 2025, Oliver passed away peacefully in our arms after it was found two days prior that he could no longer support himself breathing.

Oliver was not expected to live to a normal life expectancy, and our decision to let him go came from a place of love and understanding; understanding that ours and Ollie's value of quality of life over duration of life was always on the forefront of our minds.

As a last act of physical kindness, Oliver has been able to donate both of his kidneys to a perfect match recipient halfway across Australia.

Multiple forms of genetic testing is still being completed to perform an official diagnosis for his condition.


Our grief and emotions are still quite raw, however we're also relieved and at peace ourselves knowing that Ollie is now at rest.

He fought, he won over the hearts of so many, and now, in the words of his big sister Addy, he has caught the "fast bus" to somewhere beautiful and pain free. We know that he'll always be with us, and in our dreams we'll catch up with him for a moment on the fast bus too.

Thank you for taking the time to read Ollie's story, he looks forward to keep sharing his cheeky smile with everyone!

Co-organizers1

Brad Tapp
Organizer
Wivenhoe, TAS
Katie Poole
Co-organizer
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