A JERSEY mother said she has “been given new hope” after her five-year-old daughter was selected to trial a computer game that could help transform the way doctors treat children with sight loss.
The online games, which are being pioneered by the University of Southampton, allow researchers to measure how clearly and quickly someone can see something.
Carly Thorpe’s two daughters, Nevaeh (5) and eight-month-old Novah, were diagnosed with albinism.
The two sisters experience nystagmus, a common symptom of albinism which is characterised by rapid and uncontrollable eye movements. This can cause problems with vision, depth perception, co-ordination and balance.
Mrs Thorpe first noticed Nevaeh’s eyes quivering when she was eight weeks old, but was told it was part of the eyes developing.
“We were living in Dubai when she was born,” she explained.
“I just knew something was wrong. I could see that her eyes were moving from side-to-side, and she couldn’t focus on anything. I was so worried she was blind.
“It was only when we moved back home to Jersey a couple of years ago, that we started getting the answers we needed.”
Now, five-year-old Nevaeh is trialling a new digital game which will assess whether her prescribed glasses are improving her eyesight.
“Nevaeh’s eyesight is really bad,” her mum explained.
“She can’t fully open her eyes in the daylight and so we’re really limited with what we can do outside.
“She’s a wonderful, happy little girl who takes everything in her stride, so I want to try and do everything we can to improve her sight.”
Mrs Thorpe explained that her eldest daughter is going into Year 1 this month, and her parents “don’t want her to be held back”.
“We’re really hopeful the combination of better testing through the games and her glasses will improve her sight, but we know it will take time,” she added.
Developed by the University of Southampton spin-out company Nucleolus Software, the pioneering computer games allow researchers to measure the speed in which the participant can see something.
The ‘nystagME games’ involve finding hidden objects, matching items, and even an interactive fast-food kitchen where the participant makes burgers by visually checking customer orders and selecting ingredients.
The Thorpe sisters are both under the care of Dr Jay Self, a consultant ophthalmologist at University Hospital Southampton who is an associate professor of paediatric ophthalmology at the University of Southampton.
He explained: “There’s no cure for nystagmus, but there are a range of supportive treatments, for example, wearing glasses, taking certain medications and even eye surgery.
“Some new treatments are being developed too, and it’s important for us to be able to accurately measure their success.
“At the moment, we can only tell how effective treatment has been by using standard eye test methods, such as static letter charts and field of vision tests, which don’t simulate real-life situations at all.
“In the real world, when crossing a road, for example, everything is moving and we need to see and recognise things quickly.
“These games allow us to measure how quickly someone can see, as well as how clearly.”
Southampton University is to set up a new medical innovation centre with a focus of conditions that cause vision loss, such as albinism.
The family have received support locally from charity EyeCan, Sue Neasham at Jersey Hospital, Dr Aoibhinn Foley, Sarah Lake from Cornish Opticians and Karen Basile of Jersey Government.
Mrs Thorpe hopes that, by talking openly about albinism, she will raise awareness and promote acceptance of the condition.
“I had very little knowledge of the condition, so I can understand that others will not know why my girls look the way they do, or cannot go outside very much,” she said.
“But awareness is a step towards acceptance, so I hope by talking about it, people will begin to understand a little better what albinism is.
“I want my girls to be empowered by their albinism, not hindered by it.”
She said that the computer game trials have offered her family “genuine hope”.
“We need more research into these conditions, so to hear that the new research centre in Southampton will focus on sight loss is incredibly encouraging for me as a parent,” added Mrs Thorpe.
The University of Southampton team is appealing for people of all ages to try the games – capturing results from both those who have Nystagmus and those who don’t.
Islanders can take part in the trial by visiting the Gift of Sight website here .
