A North Queensland family will be hiking 12km to raise awareness of a rare bone disease

A Townsville family will be taking on a 12km Magnetic Island hike, despite their child being diagnosed with a bone disease so rare doctors hadn’t heard of it.

Courageous five-year-old Adelaide Tuimalealiifano, is set to take on an incredible challenge with her family Amanda and Jaster Tuimalealiifano, to raise awareness and funds for Multicentric Carpotarsal Osteolysis (MCTO). Picture: Shae Beplate.

A Townsville girl has been diagnosed with a rare bone disease impacting less than 60 people worldwide, but she isn’t letting it stop her from living life to the fullest.

Adelaide Tuimalealiifano lived the normal life of a young girl, until she collided with another child at a water park and was knocked over.

“The next day, she couldn’t stand, she couldn’t bear any weight at all,” her mother, Amanda Tuimalealiifano said.

After years of vigorous testing, including genetic testing and three MRIs, and being misdiagnosed with Kohler’s disease, Adelaide was diagnosed with multicentric carpotarsel osteolysis, also known as MCTO, in September 2024.

“The neurospecialist, all of the doctors, everyone that we had worked with had never even heard of this disease,” Ms Tuimalealiifano said.

Courageous five-year-old Adelaide Tuimalealiifano, is set to take on an incredible challenge with her family Amanda and Jaster Tuimalealiifano, to raise awareness and funds for Multicentric Carpotarsal Osteolysis (MCTO). Picture: Shae Beplate.

“That’s how rare it is.”

MCTO is a progressive bone loss disease which causes the body to absorb bones faster than it builds them and which primarily impacts the hands and feet.

Less than 60 people worldwide have been diagnosed with the disease, and Adelaide is the second in Australia.

But Ms Tuimalealiifano said she didn’t want Adelaide’s diagnosis to impact her life.

“We didn’t want the adventures and the experiences the other kids get to end and so we thought what better way to raise awareness than this amazing hike on Magnetic Island,” she said.

Adelaide and her family will tackle the 12km Great Island Trek on Magnetic Island, hoping to raise funds and awareness for the disease.

“For a five-year-old in a wheelchair, there’s not very many people like her and our hope is to spread awareness about kids with disabilities,” Ms Tuimalealiifano said.

“This is new for her, so she does notice that people look at her a lot in public and ask questions.”

“I want parents to not be ashamed of that, it’s a great opportunity for education and to open the conversation about disability and kids who look different.”

Adelaide isn’t letting MCTO slow her down, Ms Tuimalealiifano said she’s still enjoying being a child.

Courageous five-year-old Adelaide Tuimalealiifano, is set to take on an incredible challenge with her family Amanda and Jaster Tuimalealiifano, to raise awareness and funds for Multicentric Carpotarsal Osteolysis (MCTO). Picture: Shae Beplate.

“We just started at the Broadway Academy and they’ve been wonderful even though she’s the only one in the wheelchair in her class,” she said.

“Just because she’s in a wheelchair doesn’t mean that she doesn’t want to be involved in the same things as other people.”

She said she’s shared stories connected with other families impacted by MCTO, including some in Hungary, Israel and the United States.

“It’s been really interesting and they all look very similar which is even more wild.”

Locals can support Adelaide’s journey by sharing her story and donating towards MCTO fundraising campaigns.

Originally published as A North Queensland family will be hiking 12km to raise awareness of a rare bone disease