LITTLE CUTIE: Sophia Lonergan was born with Sturge-Weber Syndrome, a condition her parents are trying to raise awareness about.
LITTLE CUTIE: Sophia Lonergan was born with Sturge-Weber Syndrome, a condition her parents are trying to raise awareness about. Rob Williams

Family hope to highlight Sturge-Weber Syndrome on Ellen

TAKE a good look at this face. You might be seeing a lot more of it.

Ipswich toddler Sophia Lonergan was born with Sturge-Weber Syndrome - a disorder characterised by nervous system problems and a facial birthmark.

Sophia's birthmark, which her family calls her beauty mark, stretches across 75% of her face and parts of her body.

Since she was born, Sophia's parents Mandy and Ryan have been working to promote acceptance of people living with their daughter's condition.

In a bid to do that, the Longergans are now trying to get Sophia's face on worldwide television with a campaign to have her daughter appear on The Ellen DeGeneres Show.

The popular variety show, which is filmed in the US, is seen in 21 countries and has an audience of more than 16 million viewers.

The chance to appear on the show became a possibility after a Melbourne couple offered to fly Sophia and her parents to the US for free.

The couple, Mike and Mel Duffy, had recently won a competition where they received a million Fly Buy points to use.

Like the Lonergans, the Duffys also had a young daughter with the same condition as 17-month-old Sophia.

For Mr and Mrs Duffy, the prize offered them the chance to attend the annual Sturge-Weber Foundation International Conference in Chicago, US.

Wanting to help other families in their situation, they used their leftover points so that the Longergans could come with them.

Sophia Lonergan was born with Sturge - Weber Syndrome, a condition her mum is trying to raise awareness on. Photo: Rob Williams / The Queensland Times
Sophia Lonergan was born with Sturge - Weber Syndrome, a condition her mum is trying to raise awareness on. Photo: Rob Williams / The Queensland Times Rob Williams

"I had never met Mel and Mike before," Mrs Longergan said. "They tracked us down via an article about Sophia last year in The Queensland Times.

"When they phoned me out of the blue and explained how they wanted to help us, I was in tears, it was an amazing thing to do."

In addition to the Longergans, the Duffys also invited another family in North Queensland whose child had Sturge-Weber as well.

The three-day conference allows people to meet families living with the condition to exchange ideas, support and advice.

Experts who attend also provide medical and research updates and help people advance their understanding of the syndrome.

While in the US, Mrs Lonergan said she wanted to appear with Sophia on Ellen, not only to create more awareness about Sturge-Weber, but to publicly thank the Duffys.

"I want everyone to know about Sophia's condition and accept her and others like her," she said."Sturge Weber is not contagious but awareness is.

"I also want to share what Mel and Mike did for us. They could have easily used the money for a relaxing holiday, instead they chose to help some strangers."

The campaign to appear on Ellen was launched on social media this week. The Facebook page Ellen Meets Sophia already has 2500 likes. People are encouraged to show their support by joining the page.

The facts

  • Sturge-Weber Syndrome has no clear genetic pattern, and two affected individuals almost never arise in the same family.
  • The syndrome presents in all races and with equal frequency in both sexes.
  • Port wine birthmarks occur in 3 of 1000 newborns.
  • In a patient with a facial port wine birthmark, the overall risk of having SWS is only about 8% to 15%.


Ship detained as crew alleges mistreatment

Ship detained as crew alleges mistreatment

The crew say they have lost weight from the lack of food onboard.

Warning of potential sink hole at tourism hotspot

Warning of potential sink hole at tourism hotspot

Residents have been urged to be cautious.

Local Partners