Our beautiful little boy, Harvey Hartono, came into the world unexpectedly on Monday 3rd February 2025 at just 31 weeks and 5 days.

On Tuesday 18th March 2025, Harvey was diagnosed with Congenital Myasthenia Syndrome (CMS)—a very rare neuromuscular condition that severely affected his ability to independently breathe and swallow. Harvey was ventilator dependent for his entire, short life. Because of how rare his specific variant was, treatment options and knowledge were heartbreakingly limited.

Despite this, Harvey showed extraordinary strength. He spent 13 weeks in the care of three incredible hospitals—Gold Coast University Hospital, Mater Mothers, and Queensland Children’s Hospital.

Surrounded by love, Harvey passed away peacefully in our arms on Monday 5th May 2025.

We never got to bring him home. Life can be so cruel and unfair. Even in the toughest of days, Harvey lit up our world. He had a cheeky little smirk, loved finger hugs and gentle head massages, and brought a kind of love and light we will carry forever.

Love Emma & Ben (Mum and Dad of Harvey Hartono)