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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.



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