Qld boy Oliver Challinor with rare DNA variation defies doctors’ outlook

A family has experienced an emotional rollercoaster after their four-year-old was diagnosed with a rare genetic variation that means his head is the size of a three-month-old baby’s. HOW YOU CAN HELP.

A Queensland boy is living with a condition so rare he was just the sixth in the world to receive a diagnosis.

Yandina boy Oliver Challinor, best known as Ollie across the Sunshine Coast, has what mum Ashleigh Rossetto describes as a tiny little fault, not passed down, in his DNA.

The genetic variation means Ollie is tiny and his head and brain is still the size of a three-month-old’s although he is four years old.

He was tube fed for a long time but currently eats independently.

Ms Rossetto said doctors noticed Ollie’s head was not growing at his six-week check-up, and it was “a slippery slope” with many changes for the family.

Ashleigh Rossetto and her son Oliver Challinor. Picture: Contributed

“It was a very, very dark time,” she said.

Ollie was finally diagnosed after about a year and a half and Ms Rossetto, now a stay-at-home mum, grappled with the “why” of his condition for some time.

Oliver Challinor was the sixth person in the world diagnosed with his genetic condition. Picture: Contributed

“It was just a random fault in his little DNA make-up,” she said.

“There were no words.

“Also because now you have no idea what the future looks like because there’s nothing to base it off.”

With an unclear path forward and a grim diagnosis by some doctors that Ollie would never walk or talk, Ms Rossetto, her husband, who is an events technical director, and their three sons pushed on with the help of grandparents.

Oliver Challinor has plateaued in his development and his family is aiming to travel to Sydney to help him. Picture: Contributed

The mother-of-three said it was particularly hard to seek out others in the same situation given the rarity of Ollie’s condition.

“I have not found anyone out there,” Ms Rossetto said.

“But also when he was diagnosed, it was only a year-and-a-half before that they’d even discovered this genetic variation.”

Ms Rossetto said it was a “dreary” outlook for Ollie, but he had defied doctors by walking, communicating in his own way and finding friends wherever he went.

“When you meet him, everyone melts a bit and you can just tell he’s extra special,” she said.

“He will always just come up to someone, he’ll hug people, he just gets you on a soul level, it’s just the craziest thing to witness.

“Obviously all kids are amazing but there’s something about Ollie that, even being non-verbal, he will find someone no matter where we go, who he can convince to do anything.”

Ollie’s development has “plateaued” a bit recently.

Ms Rossetto said she contacted the NAPA Centre in Sydney, a world-renowned paediatric therapy clinic, and secured a spot for her son.

“It is mostly covered by NDIS, which we’re very thankful for, but then the cost of getting us down to Sydney and the accommodation and everything required with that is a huge chunk,” she said.

She said there was a centre in Brisbane but the Sydney centre was bigger and better-resourced.

After much encouragement from friends, and some initial hesitation, Ms Rossetto decided to start a GoFundMe to cover the cost.

The generosity of people blew her away with the fundraiser gleaning more than $7000 in about a day.

She can now also afford some much-needed therapy equipment for her son along with the trip costs.

“It’s been an extremely lonely, hard, heavy period for many many years and this has been the craziest shock that everyone has rallied around us within 24 hours,” Ms Rossetto said.

Originally published as Qld boy Oliver Challinor with rare DNA variation defies doctors’ outlook