Henry’s Story

Henry was your typical two-year-old. He was extremely curious and would climb all over the furniture, and his mum, Alex, describes him as a little rascal.

But one morning in June 2022, Alex took Henry and his three siblings to the park. While chasing a bird, Henry slipped and fell, hitting his head on the ground.

“I watched it all happen from a distance and ran over. Henry couldn’t wake up properly. He was conscious but not really there.”

Concerned, Alex called an ambulance, and off they went to their local hospital, where Henry was diagnosed with a concussion and cleared to go home, but once they got there, Henry took a turn for the worse.

“He couldn’t get off the couch. It just didn’t seem right to me, so we returned to the Emergency Department the next day.”

Back in the Emergency Department, Henry was taken for a CT scan. While alone in a hospital emergency room, Alex was told that the scan had found a tumour the size of a mandarin on his brain. Henry was immediately transferred to Queensland Children’s Hospital.

“Another scan confirmed it was a large posterior fossa tumour. We were told that we wouldn’t know anything about what it was until it was biopsied, and the results would take a few weeks.”

Henry was taken in for brain surgery within two days of his diagnosis. “He suffered some severe deficits from that surgery. He was unable to talk, eat, swallow, or move a muscle for weeks.”

Henry spent two months relearning to crawl and stand, living with a feeding tube because he couldn’t swallow. He started chemotherapy and slowly started becoming his usual self again.

A second tumour biopsy showed that he had an Atypical Teratoid Rhabdoid Tumour (ATRT). Unfortunately, these have a much higher chance of relapse.

This new diagnosis devastated the family, but they remained positive. Despite the setback, Henry wouldn’t let anything slow him down.

“Although the chemo was high-dose, he was just progressing and doing amazing things. He was riding his trike bike down the halls every day, having the doctors chase him. It was amazing,” says Alex, laughing.

Radiation therapy has been one of the most complex parts of Henry’s cancer journey, and he has been left with limited mobility in the right side of his body.

Since his diagnosis, Henry’s three siblings have felt the burden of cancer.

“His sisters know more about cancer than any eight and five-year-old should. But they’re amazing. Ava is basically a trained Occupational Therapist now, and she helps Henry with all his therapies. She loves it; she’s so caring.”

Alex learned about Camp Quality in an information pack from a social worker. Not long after, the family went on their first Family Camp. Despite almost cancelling, Alex was thrilled that they went.

“It was amazing. We hadn’t been away as a family since Henry had been sick. It’s really daunting to go away with so many young children, and as a parent, you’re like, this isn’t going to be fun; it is going to be hectic. But it was incredible.”

At the camp, Henry and his family were able to spend quality time together to laugh, have fun and make positive memories outside of the hospital. You can make a donation to support more families like Henry’s facing a cancer diagnosis.

Sadly, since publication, little Henry has passed away.

Amidst their grief, Alex and Mark let us know the family wanted us to continue to share Henry’s story so more families can make happy memories like the ones now so precious to them.

Henry “Muffin” Hugo Paul Darvell  
Born 2 February 2, 2020 Died 3 November, 2023.