Six-year-old Sophia Lonergan was born with Sturge-Weber Syndrome. Photo: Cordell Richardson
Six-year-old Sophia Lonergan was born with Sturge-Weber Syndrome. Photo: Cordell Richardson

How prep is life-changing for little Sophie

AT six years old, life is a little different for young Sophia Lonergan compared with other little girls.

Sophia lives with a rare neurological condition called Sturge-Weber Syndrome, which manifests as a birth mark on her chest, face and brain.

"She's severely mentally and physically delayed and has lots of challenges and that means we spend an awful lot of time in the hospital," Sophia's mum Mandy Lonergan said.

"That leaves her unable to sit, stand, walk, talk, feed herself and any of those things."

The past year has allowed Sophia to make rapid progress. She started Prep earlier in the year and her Mum said her growth had been amazing.

"We were told she would never walk or talk, that was our diagnosis from when she was teeny-tiny and she can currently sit supported and she can sit without holding on for say 10-20 seconds at a time.

"With the right motivation, she can sit for periods of time on her own," she said.

"School has changed her life. Her teachers are just amazing and as of last week she's starting to say words.

"We can now even get her balancing up at a bench, so not freestanding but balancing against something, amazing. A year ago, that wasn't even on the cards. She'll do it!"

During a recent 2am trip to the hospital filled with stress and emotion, her mother was astounded by the care her family received from one devoted nurse.

"You can imagine how much time we spend in hospital and over the past year we've literally been in contact with hundred of medical staff, doctors, nurses, surgeons, professors, you name it and hands down out of all of those people that woman was the best medical person we've ever had," she said.

She decided to nominate nurse Kylie Fitzpatrick from Queensland Children's Hospital for going above and beyond as part of Juiced TV Super Hero awards program, supported by QSuper.