Levi Nikolic was born with a rare condition that causes facial paralysis.
Levi Nikolic was born with a rare condition that causes facial paralysis.

Meet the boy who cannot smile

HE'S the little boy who cannot smile.

Three-year-old Levi Nikolic was born with the rare condition, Moebius syndrome, causing facial paralysis.

Although he experiences emotions like most other little boys his age, he's unable to express joy through a smile, disappointment with a frown or surprise by raising his eyebrows.

"Levi is often misinterpreted for being dull, submissive or unfriendly because of his facial paralysis and inability to smile at others, or show expressions, which greatly affect his social interactions," his mother Julie Nikolic said.

"We know when he's happy because he'll giggle. But the hardest thing is seeing Levi not being able to smile and show his happiness to the world. It's something that people don't comprehend. They think everyone can smile."

Levi Nikolic, 3, who cannot smile after being born with Moebius syndrome, a rare medical condition. Picture: Jamie Hanson.
Levi Nikolic, 3, who cannot smile after being born with Moebius syndrome, a rare medical condition. Picture: Jamie Hanson.

Julie and her husband Aaron first realised something was wrong soon after Levi was born when a nurse on a routine home visit noticed he wasn't latching on properly to breastfeed and was losing weight.

"He didn't have the ability to close his mouth properly," Mrs Nikolic said.

A scan at the Queensland Children's Hospital when he was about three months old pinpointed the problem - his sixth and seventh cranial nerves were underdeveloped - a key feature of Moebius syndrome.

Those particular cranial nerves control eye movement and facial expression.

The condition, which has no known cause, has also resulted in their mischievous little boy having excessive drooling and speech difficulties.

Levi Nikolic, 3, is like many other little boys but cannot smile after being born with Moebius syndrome. Picture: Jamie Hanson
Levi Nikolic, 3, is like many other little boys but cannot smile after being born with Moebius syndrome. Picture: Jamie Hanson

"Levi has been wearing bibs since birth and is on medication to decrease saliva," Mrs Nikolic said.

He has been seeing a speech therapist since he was six months old to help with feeding and to improve his speech clarity.

Mrs Nikolic is concerned that without "smile surgery", Levi's facial paralysis will eventually affect opportunities for employment and relationships in adulthood.

"Being able to show emotion is so important," she said.

The Nikolics, from Redcliffe, north of Brisbane, wanted to tell their story to raise awareness about Moebius syndrome in the hope of creating "a more tolerant and accepting world".

They also hope to raise money to take Levi, who has an older sister Indy, 4, to California for an eight-hour "facial reanimation" operation under plastic surgeon Dr Andre Panossian.

This Nikolic family (clockwise from top) Aaron, Julie, Levi and Indy. Picture: Jamie Hanson
This Nikolic family (clockwise from top) Aaron, Julie, Levi and Indy. Picture: Jamie Hanson

Dr Panossian has consulted with the Nikolics via Skype and has agreed to perform the surgery on Levi once he turns five, which they hope will reduce his drool, improve his speech and confidence, as well as give him a smile.

The surgery will cost about $80,000, including doctors' fees, hospital costs and post-operative care.

Click here to donate to the family's Go Fund Me account for Levi's surgery



What Qld did in lockdown instead of drinking

Premium Content What Qld did in lockdown instead of drinking

Coronavirus Qld lockdown saw increase in illicit drug use

DON'T MISS OUT: $1 a week for first 12 weeks

Premium Content DON'T MISS OUT: $1 a week for first 12 weeks

Deal gives you access to local, regional and metro News sites

Fiery Premier sinks elbow into opponent

Premium Content Fiery Premier sinks elbow into opponent

Qld election debate: Premier pins hopes on coronavirus record