Riley’s Story

“I could lose my vision. I just want to be able to see, like any other person.” Riley, a patient of the Lions Eye Institute 

When Riley was little, his mum and dad would be standing in his brightly lit bedroom doorway after saying  goodnight, but he didn’t know they were there. He couldn’t see them. Along with having night-blindness, his field of vision was narrow. He’d often hurt himself badly tripping over something on the ground. Many ordinary trips to the shops with his family would end in stress, worry and disorientation. He’d get ‘lost’ walking off with another family because he couldn‘t see who was beside him.

Riley’s optometrist prescribed him glasses for long-sightedness, but couldn’t figure out the underlying cause for his vision problems. That stayed a mystery until Riley was 11 and he became a patient at the Lions Eye Institute.

Riley and his parents were shocked to learn he has retinitis pigmentosa and it is causing slow but progressive damage to the cells in his eyes that sense light. Some people with this inherited eye disease retain limited tunnel vision. Others lose their sight completely and there are currently no standard treatments or therapies.

“Riley might lose his vision quite dramatically, quite quickly, and we just don’t know when or if that will happen,” says Riley’s mum, Kelly. “The uncertainty of it is scary.”

But regular visits to one of our clinician researchers, Dr Fred Chen, has been giving Riley and his family new hope. The smallest changes in Riley’s eyesight are being monitored so any concerns can be identified.

Thanks to our supporters, Dr Chen has also spent years researching the cause of inherited retinal diseases like Riley’s. Part of this work involves deriving stem cells from patients’ skin to clone their retinas and explore the effect of genes on their sight.

“We’ve managed to work out which mutations are causing Riley’s eye  disease and now we’re working on strategies to overcome these,” says Dr Chen. “There’s a possibility we can use a molecule to modify the effect of this mutation, to minimise the damage and slow down the degeneration in Riley’s vision.”

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