Living with half a brain: seeing life anew through the camera lens.

Melanie Pearce with Luke Wong

After having radical, but life-changing surgery to remove half her brain, a young woman from regional New South Wales has found new purpose as a photographer and wants to help change the lives of other young people with disabilities.

Despite being legally blind, she has found when she looks through the lens of her new camera, her vision is unimpeded and her view of the future is much the same.

“The world is so much clearer compared to what it was when I didn’t have the surgery,” said Karley Miller, 18, of Cowra.

Hemispherectomy: a risk worth taking

Ms Miller has Sturge-Weber syndrome, which is a rare medical condition that resulted in her having seizures, a facial port wine birthmark and vision impairment through glaucoma.

She also has cerebral palsy.

Before surgery she was having almost constant seizures and had a brain herniation protruding from her forehead.

“The right side of her brain was basically killing her. She had to have this surgery or she wouldn’t have made it here today,” Ms Miller’s mother, Nikki, said.

Surgeon, Mark Dexter, told the family the right side of Karley’s brain may as well be removed in radical surgery called a hemispherectomy.

Karley after her surgery in September 2015. (Image: ABC)

A decision on her own terms

Nikki Miller left it up to Karley to decide what to do, because at 17 she was close to adulthood.

"It's her body and I would support her no matter what," she said.

Karley Miller said while the thought of the radical surgery was shocking and the decision to proceed was emotional it was "all on my own terms".

"The risk was death but I wasn't going to go through daily debilitating headaches lying on the couch every afternoon holding my head pleading for someone to help," Ms Miller said.

"To be honest I didn't think I'd be here today [without surgery]. One of my seizures was going to kill me."


Seizures stopped immediately

The surgery, in September 2015, at Sydney's Westmead Hospital involved cutting Ms Miller's head from ear to ear, taking away some of her skull and removing the right side of her brain.

The seizures stopped the day after the surgery and she has not had one since.

Her headaches have also decreased to only occasional ones and she is able to function and look forward to the future.

A new vision through the lens

Several months of recovery and rehabilitation followed the surgery and then Ms Miller and her family began to look at what she would do with her newfound lease on life.

A friend suggested photography and so for her 18th birthday early this year she was given a camera, which is now almost never out of her hands.

Unbeknown to Ms Miller, her mother contacted the Sebastian Foundation, created by pop star Guy Sebastian and his wife Jules, and the teenager was given the opportunity to go on work experience of a lifetime.

With her mother she travelled to the United States and received tutoring from award-winning photographers including Jerry Ghionis and Colin Smith.

Giving back through photography

After she returned from the US, Ms Miller held a debut photography exhibition in Cowra.

One of those in attendance was her friend, Xander, a young boy from Walgett in remote far-west New South Wales.

The pair met while staying in Ronald McDonald House at Westmead Hospital.

Ms Miller decided to give back to others like Xander and is now working with the heART Project, which is a collaboration between the Sebastian Foundation and Australian photographer Karen Alsop, to take portraits of children with disabilities.

He was her first subject and she took a photograph of him reaching out from his wheelchair and composited it with an image of a giraffe taken at the National Zoo in Canberra.

She travelled to Walgett several weeks ago and gave the image to Xander and his family to tears and great joy.

Ms Miller is now preparing a portrait of a six-year-old girl named Hallie who has Down Syndrome and lives in the remote Lightning Ridge district.

She said she feels a special connection and empathy with children such as Xander and Hallie.

"One of the things that inspires me is to give back to those, especially when I got help," she said.

Karley Miller's new photography business is also giving her direction in life as she is now able to reflect on the past.

"It doesn't matter if things get tough, there are things that you can push forward," she said.

"No matter what life throws at you, you can do it."

This post originally appeared on ABC News.

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