Loren and Colby Fainga'a on Georgia, their rare and precious daughter

The wife of Melbourne Rebels rugby player and Queanbeyan boy Colby Fainga’a expected to strap her tiny princess into a baby capsule and snap a quick Instagram shot of her little family in the car, before heading home.

But as soon as little Georgia Fainga’a was born, at 37 weeks, she struggled.

She "just wasn't thriving", Loren recalls, and was taken to the Newborn Intensive Care Unit for specialised treatment. A tiny catheter was placed in her hand and a pink 'Baby Faingaa' sign was sticky-taped to the head of her plastic crib.

Over the next fortnight, Loren watched as new babies came to the NICU, and then left again with happy and relieved parents. She knew there was something desperately wrong with her little girl. She would call Colby 10,000 kilometres away and relay her fears.

“Loren always said that she thought something was wrong, there was something missing,” Colby recalls.

“I would deny it and say 'no, no she's fine, she's fine.”

Colby returned to Australia and the Fainga’as received the all-clear to take Georgia home. But Loren's anxiety levels were through the roof. Finally, when Georgia was five weeks old, a blood test revealed she had Sotos Syndrome, a rare genetic condition causing rapid physical overgrowth during the first years of life.

"I almost felt like I wasn't standing in the room anymore, it was like being hit by a bus," Loren recalls.

"I'd never even heard of Sotos Syndrome."

Despite being told by doctors not to Google the syndrome, the fierce researcher in Loren - she's a qualified lawyer - spent hours scrolling through medical studies and limited interviews with other parents of Sotos children.

Sotos syndrome is diagnosed in roughly one in 14,000 babies but because it’s a spectrum disorder, it affects sufferers differently.

Some individuals are severely affected and require lifelong care, while for others the syndrome is quite mild. For these individuals, the gaps in early delays begin to close as years pass.

"Georgia will be significantly taller than her peers and have a much larger head than other kids her age," Loren says.

"The accelerated growth will continue into her teenage years and, ironically, her rapid physical growth is likely be accompanied by delayed motor, cognitive and social development.”

Loren describes the first few months of Georgia’s life as “the hardest time of my life”. Loren herself was diagnosed with postnatal depression and post traumatic stress disorder while Colby did everything he could to support the two girls in his life.

“When I was pregnant with Georgia, I did everything right. I abstained from alcohol. I ate leafy greens, oily salmon, a handful of nuts daily, and took my prenatal vitamins religiously,” Loren says.

“I believed I was doing everything I could to ensure my baby would be as healthy as possible.

“And then this happened. It felt cruel and unfair.”

But then Georgia started smiling. And staring intently into Loren and Colby’s faces. And developing her own precious personality. Loren realised that Sotos Syndrome was something her baby daughter had, but it didn’t and wouldn’t define her.

“I just started to feel like I had this connection with her and felt like I am the right person to be this little girl's mum,” Loren says.

“I knew this because I knew that I was willing to do the work and get the absolute very best out of her.”

The work includes regular sessions with physical, occupational and speech therapists. So far 13-month-old Georgia has hit every single milestone - from rolling over and sitting on her own to now standing.

Loren has not only accepted her family’s unplanned and unusual journey, she wants to share Georgia’s experiences with the world.

Her personal blog, My Girl George, and her Instagram profile feature her baby girl’s milestones and her thoughts on being the mother of a baby so rare. She writes for Mamamia and was a keynote speaker at the inaugural Invincible She event in Canberra last November.

“There is no-one more prepared for or determined to take this journey with our precious girl,” she says.

“Everyone in our family has just said, ‘She's changed our lives. She’s just given us a whole new perspective on life and what’s important’.”

Loren and Colby, who met in 2006 when she was a student at St Clare’s and he was a student at St Eddie’s, are expecting their second baby in just a few weeks time but aren’t concerned about the possibility of another baby with a genetic syndrome.

“Sotos Syndrome is linked to a genetic mutation, so Colby and I had to be tested,” Loren explains.

“We don’t carry the gene mutation so with future pregnancies we basically have the same chance as the rest of the population, so a very slight chance.

“In Georgia’s case, it was just by sheer chance that there was a gene deletion.”