My four daughters could get it: Mother’s anguish over incurable genetic eye disease

A mother-of-four who had two major eye surgeries to fix her vision has told of how she then learned she would go blind due to an incurable genetic disease.
Sabrina Fink, 49, said there were warning signs that something was wrong with her vision in the years following her surgeries.
She initially experienced disorientation, fatigue and brain fog.
Her eyesight then became blurry and she stopped seeing people next to her.
“During a Zoom meeting, I could not see a large TV screen clearly,” said Ms Fink, who lives in Cairns and works as a teacher.
“Everyone started telling me what a menace I was in public.

“I was taking people out with my trolley at the supermarket because my peripheral vision was gone.”
When Ms Fink noticed a dark shade across her left eye, she sought advice from her optometrist.
In July 2025, she was formally diagnosed with Retinitis Pigmentosa (RP), a rare, degenerative and genetic eye disease.
“My central vision is quite good but I can’t see the person sitting next to me,” Ms Fink said.

“I don’t see things underneath my feet.

“People can come in and out of a room, and unless they’ve made a sound, I wouldn’t know they were there.

“I’m guessing soon that this tunnelling will get smaller and smaller.”

Ms Fink’s worst fear is not going blind, it’s the possibility that her four daughters could inherit the same condition.

“Life with no vision is a constant thought,” Ms Fink said.

“I spend every day thinking about little things, like how am I going to cook or how am I going to do the shopping?

“But the thought I’m not coping with is that it could be passed on to my children.

“As a parent, you don’t want your own child to be sick, you don’t want anything to happen to them.

“I use the word burden because that’s what I feel like I’ve done to my children.

“I’ve burdened them with this and it’s awful.”

Sabrina Fink with her eldest daughter Ellie. Image: Supplied.

Sadly Ms Fink already had to overcome so much to be able to see before it was cruelly taken away from her for a second time.
Ms Fink was born with severe myopia or near-sightedness.

Her childhood was spent wearing “very thick and uncomfortable” glasses, which cost about $1000 per pair, and rigid contact lenses.

“My mum used to take me to the beach when I was young and I could not see a thing,” she said.
“But night-time was the worst because I had to switch out my contacts for these huge glasses and I couldn’t navigate around,it was a nightmare.”
Ms Fink was repeatedly told eye surgery was too risky due to the shape of her eyeballs being elongated, and not rounded, which could cause retinal detachment.

But in 2017, after decades searching, she found a specialist willing to perform two major surgeries: Implantable Collamer Lens surgery, where a soft flexible lens was implanted inside Ms Fink’s eye, and Photorefractive Keratectomy, a type of laser eye surgery.

By this time, Ms Fink said she could not see anything beyond the end of her nose without glasses.
“I could see light and shapes, but that was it. It was life by feel,” she said.

After 37 years andaround $20,000 spent on her myopia surgeries and the associated travel, Ms Fink finally achieved near-perfect vision.

“I could see almost 20/20. It was an incredibly positive milestone after so many years of challenges,” Ms Fink said.

But then, only a few years later, a diagnosis of RP took her vision away again.
The two diseases can be linked or exist separately, and Ms Fink is undergoing further tests to confirm which is the case for her.

Sabrina Fink was born with severe myopia and had to wear thick glasses from the age of three. Image: Supplied.

Today, she only visits places that are familiar because she feels “very uncomfortable” being alone in public.

She is not yet using mobility aids, like a cane or guide dog, but plans to speak with Vision Australia about her options.
She will also lose her driver’s licence in a few months because her eyesight does not meet the minimum requirements.
“There are moments of grief, especially around losing the full independence that comes with driving, but I am determined to adapt and refuse to let RP define me as a victim,” Ms Fink said.
According to specialist ophthalmologist Associate Professor Heather Mack, RP “affects the photoreceptors in the retina or their supporting cells” and is thought to be due to genetics.

It typically begins with children and adolescents struggling to see in the dark, and progresses to a gradual loss of peripheral vision during early adulthood.

This can worsen to tunnel vision by “around 40 or 50” and, following that, complete blindness in some people.

“It’s a lifetime condition but the speed does vary, people might go quicker or slower than that,” Professor Mack said.

“Every now and again we diagnose someone when they’re 70 and have a very mild form of the disease, which is a surprise to them.”

Sabrina Fink and her dog Milo, who she often trips over due to her poor vision. Image: Supplied.

There is currently no cure for RP – instead, Professor Mack said the “goal” was gene repair and replacement.

She said more people “are interested” in undergoing genetic testing for RP, but face barriers.

With no Medicare rebate, patients need to spend approximately $800 out of pocket to be tested.

The test – which involves a simple saliva swab – is also done overseas in countries including Finland because there are few labs in Australia with the appropriate clinical standards.

Despite RP being an inherited genetic disorder, Ms Fink has no family history.
She refers to herself as “patient zero” because the condition formed as a result of being born with an abnormal X chromosome.
Nonetheless, her four daughters are now at risk of inheriting the disease, and have together decided to undergo genetic counselling and testing.

Sabrina Fink was born with severe near-sightedness. Image: Supplied.

Ellie Fink, who at 21is the eldest, said she tries “not to think too hard” about the future.

She recently completed a test to check her peripheral vision and received good results, which she said was a “big relief”.

“The genetic testing that’s happening at the moment is astronomical, it’s amazing,” said Ellie, who lives in Brisbane.

Ellie said it has been “really hard” watching her mum go through this journey not once, but twice.

“I spent a lot of my childhood watching mum with big glasses and sore eyes, and then when she got the surgeries a few years ago, we thought everything was perfect,” Ellie said.

“It feels like a robbery, but my mum is the strongest woman I know.

“I’ve always wanted to be a mum myself, and as long as my kids are anything like her, I’ll be the happiest woman alive, whether I’ve got vision or not.”

Ms Fink also has her mind set on the future generations of her family.

“We hold hope for a cure” she said.
“I always wanted to be the grandma who could be there helping, but now I think, will I even get to see them?

“It’s a really terrifying thought, but you can’t think too far ahead.

“Blindness exists on a spectrum, and visually impaired people lead rich, fulfilling lives.

“I may not live the life I once imagined, but I am committed to living the life meant for me.”