For 34-year-old Ben Morgan, an extremely rare chromosomal condition has never stood in the way of achieving what he sets out to do.

And his quest to raise money for vital research into the condition is no exception.

Ben suffered a brain haeommorage at one-day-old and was diagnosed with a rare chromosomal abnormality known as Tetrasomy 18p at four months.

He is one of just 250 people in the world with the condition and is the second oldest by just two years.

Ben is on a mission with his family to raise money for the Chromosome 18 Research and Registry, while raising awareness and connecting other isolated families.

Ben, who lives with his parents at their Wagga home, travelled to America last month for the international registry conference, where they learned the little funding they received had been stalled.

Attendees from across the world vowed to fund-raise $15,000.

In one night alone, Ben and his family have raised more than $1000.

The results speaks for themselves.

Ben is well-known around Wagga and has defied medical expectations.

He underwent 20 surgeries before the age of two and his parents, Paul and Juli Morgan, were told he'd never walk or talk.

"We were devastated, absolutely devastated," Juli said.

"We worked hard but it's resilience, it's just him.

"His determination and his ability to communicate."

Ben has since developed osteoathritis and has been described as having bones of an 80-year-old.

But he's done more than most for someone his age - he's been in a chopper through the Grand Canyon, flown in the cockpit of a plane and glided on board a hot air balloon.

Ben, a doting brother who was ring-bearer at both his sisters Jenni Morgan-Campbell and Hyemee Hand's weddings, still mows the lawn at the family home and has an inexplicable fascination with cars.

Jenni said he was genuinely happy and what he missed out on in life, he more than made up for.

She joked Ben could be the richest man in Wagga if he were a businessman because he was so well-known and well connected.

"He's the best brother you'll ever get," she said.

"He hugs you like there is no tomorrow.

"He sings as if no-one is listening.

"He dances like he is on stage at a rock concert.

"He loves unconditionally.

"He never misses an opportunity to give an honest opinion, especially if you have a dirty car or if it's a bomb.

"He surprises us all with the depth of his observations about the world, observations which in the rush and bustle of our days we fail to appreciate.

"He is incredibly selfless and would much prefer to learn about and help others than pursue his own self interests. He never, ever complains.

"He just gets on with living life in the moment."

Since launching the fund-raising quest online, the family has been contacted by another local family, who have a son with a similar abnormality on the 18th chromosome and who had no idea the registry even existed.

Donations can be made online through the Everyday Hero website available at https://give.everydayhero.com/au/ben-s-quest