Lifestyle

Special day to help spread awareness of Sophia's condition

Mandy Lonergan with her daughter Sophia, 11 mths, who has Sturge Weber Syndrome, on Friday her daycare will help raise awareness. Photo: Sarah Harvey / The Queensland Times
Mandy Lonergan with her daughter Sophia, 11 mths, who has Sturge Weber Syndrome, on Friday her daycare will help raise awareness. Photo: Sarah Harvey / The Queensland Times Sarah Harvey

BABY Sophia attracts a lot of attention when she's out in public.

The brave little girl is battling through the rarest form of an unusual neurological and skin disorder called Sturge-Weber Syndrome.

It is characterised by a congenital facial birthmark which stretches across 75% of her face and parts of her body.

Sophia's mum Amanda Lonergan said strangers often asked if her daughter had been burnt.

"A lot of people tend to stare and whisper when I'm out in public with her," she said.

"I can understand people's curiosity, but some of the comments people make can be hurtful."

Mrs Lonergan, who lives with her husband Ryan in Flinders View, said diagnosing and then effectively managing their baby's condition had been a difficult journey.

"When Sophia was born, doctors believed that the birthmark was just bruising from the birth," she said.

"The next day we were told it was a disorder called Klippel-Trénaunay syndrome - a condition in which blood vessels and lymph vessels fail to form properly."

But after six weeks little Sophia began to have seizures, and it was then doctors realised she had Sturge-Weber Syndrome.

"As a symptom, Sophia has a bi-lateral malformation of the brain," Mrs Lonergan said.

"Basically her brain has not formed properly, which means she could encounter learning difficulties."

Mrs Lonergan, 29, said her daughter, approaching her first birthday, was about six months behind on development.

"She can roll and hold her neck up but at that age most babies can do other things like eat solids and wave goodbye," she said,

"Each baby is affected by Sturge-Weber Syndrome differently so we don't know what to expect."

In the meantime, the Lonergans strive to normalise their daughter's life and recently enrolled her in Bindarra Daycare at Booval.

"No matter what the outcome, I never want Sophie to feel held back or sorry for herself," Mrs Lonergan said.

"Her birthmark - which we call a beauty mark - is part of her and it will be important for her to accept that."

Mrs Lonergan is keen to spread awareness about Sturge-Weber Syndrome.

Bindarra daycare will host an awareness event today to support Sophia and others with her condition.

This event will include baby animals, music, face-painting and other attractions.

It will be held in line with the second annual Sturge-Weber Syndrome Day.

Topics:  sophia lonergan



WATCH: Police release CCTV footage of Goodna robbery

An armed robbery took place at the IGA in Goodna at 6am this morning (27-9-16).

Masked men armed with large hammer hold up store

Grand final spotlight should be on NRL heroics

FINALS CHAT: Manager of rugby league Ipswich Brendon Lindsay joins co-host Anthony 'Bomber' Breeze, host Ben Wilmott and special guest Colin Scott this week on After the 80.

Origin great hoping referees don't spoil NRL final

Police remember fallen colleagues

Police Remembrance Day march to Brown's Park in North Ipswich on Thursday.

Police remember falen colleagues

Local Partners

Cliff Richard to release 101st album

Sir Cliff Richard's album cover

Sir Cliff Richard is to release his 101st album

CMC Rocks faces fan backlash over date change, headliners

The 10th annual CMC Rocks festival will be headlined by The Dixie Chicks.

FANS are not happy about festival being pushed back by two weeks.

Kim Kardashian West attacked by man trying to kiss her bottom

Vitalii Sediuk targeted Gigi Hadid last week

Madonna poses naked in solidarity with Katy Perry

Madonna posted her own nude selfie on Instagram

Little Theatre playing big shows

Robyn Harm appears in the ILT production Cruise Missile

Ipswich Little Theatre presents the Deckchairs series

Carlos Santana added to Bluesfest 2017 line up

Carlos Santana at Bluesfest 2013.

Calling all local black magic women

$40million hotel, shops development project for Mackay

Mt Pleasant hotel and retirement accommodation, proposed at 194-202 Malcomson St.

$40m development to take Mackay to 'the next level'

Housing report points to a lift in local market

AFFORDABLE HOMES: First home buyers have the opportunity to purchase modern new homes in the Ipswich region for under $400,000.

Region shaping up as the "final frontier” for affordable housing

Five ways to slash household bills and save the environment

THINK GREEN: Considering the environment when building or buying your next home can save you big dollars. The Village Building Company, who is responsible for Woodlinks Village at Collingwood Park, builds homes with this front of mind.

THERE is nothing as sweet as slashing dollars from your bills.

Investors out-bid first-home buyers in booming market

Housing generic.

Ipswich's housing market is putting more cash into sellers’ pockets

Another Ripley development

THE ENTRANCE: An overview of the last planned development for the fast growing Ripley area.

85 more home lots released