There is no doubt that local teenager Connah Newman is one in a couple of million.
The 15-year-old is a happy, affectionate and curious young man who greets every new person he meets with a cuddle and a kiss.
But it's not only his sweet disposition, Connah is just one of three known individuals with Jordan's Syndrome.
The incredibly rare genetic mutation is characterised as a neurodevelopmental disorder. Spurred on by the lack of awareness about the syndrome, mum Crystal Newman has organised a fundraising day later this month in a bid to raise money and awareness about the rare condition.
"We might raise $10 or we might raise $25,000 but it's really about raising awareness about Jordan's Syndrome," she said. "I hope everyone comes along and has fun. I would love people to take home a bit of knowledge about Jordan's Syndrome."
The syndrome has a range of characteristics including mild to severe neurodevelopmental delay as well as delay in gross motor skills, fine motor skills, speech.
Connah is non-verbal, intellectually impaired and has hypotonia (low muscle tone) which makes simple things like walking and sitting difficult. The condition is so rare that Connah and his family have only just received a formal diagnosis in February - after 15 years of unknowns.
Ms Newman said she had received incredible support from not-profit organisation Jordan's Guardian Angels - which will receive money raised on the day.
"They don't just help with the research but also support the families," she said.
"We've just jumped up to 102 individuals with Jordan's Syndrome in the world. We are fighting for a cure for not only our children and families but for the million and more people this research could help one day."
The fundraising day will include stalls, face painting, ballooning, sausage sizzle, pony rides, jumping castle, karaoke and a raffle.
The fundraising day will be held on Sunday, July 28 at Maitland Park Bowling Club from 10am to 4pm. For more information about Connah or the day, visit facebook.com/helpconnahfindhisvoice.