"How will she cross the road?": the race for a cure for 10-year-old Eve's progressive vision loss

Ongoing research key to prevent futher detoriation of 10 year old's eyesight

Tara Rooney with her 10-year-old daughter Eve who has early-onset retinitis pigmentosa (RP). 

The first inkling Tara Rooney and her husband Alan had that their daughter might have visual impairment came when Eve was transitioning from cot to bed. Despite the bedroom door being ajar to let in the landing light, Eve would feel her way to the bathroom with her hands.

An eye test at school when she was four revealed slight stigmatism but Tara couldn’t shake the feeling there was something more. “I brought her to an optician who noticed pigmentation at the back of her eye,” says the Dublin mum.

Referral to a consultant and subsequent hospital tests led to a diagnosis of retinitis pigmentosa (RP), a condition causing progressive vision loss. Eve, now aged 10, has a vision field of 40-45%. She doesn’t see in the dark or in dim light. Her peripheral vision’s reduced and reducing. “She was always getting knocks and bruises but we didn’t realise it was due to reduced peripheral vision.”

Eve attends mainstream school and has been amazingly adaptable. “She’s never known any different. She plays camogie and does gymnastics. She’s horse mad and does horse riding. She says it’s the perfect partnership because the horse has peripheral vision and can see out the sides and she can see out front.”

As mum to a child with sight loss, Tara has mixed moments. “Some days I feel I’m going to take on the world – nothing’s going to stop Eve from doing whatever she wants in life. To the best of our ability, we’ll try to make that happen. But anxieties creep in. She’ll soon be a teen, looking for independence, wanting to go out with friends. It’s going to be challenging for her and a major worry for us. How will she cross the road, be out after dark? We’re going to have to come up with strategies for all that.”

Eve is part of Target 5,000 - a programme initiated by Irish patient-led charity Fighting Blindness, it provides clinical and genotyping services for people living in Ireland with inherited retinal degeneration (IRD). Through this, the family recently got word they’ve identified the gene causing Eve’s problem. “It’s a huge step forward. It gives hope. They’ve a treatment for one of the genes – there are 80 – but not the gene Eve has. But maybe in future they might have a treatment too for her,” says Tara, also mum to Patrick, aged nine.

But with Eve having early-onset RP and time marching on, her parents feel it’s a race against time. “We just have to sit tight and hope a treatment comes along and that her vision’s sufficient at that stage to benefit from it.”

See www.fightingblindness.ie

More details

• Fighting Blindness works with three Target 5000 clinics (in Dublin, Belfast).
• Target 5000 aims to identify disease-causing gene mutation in people with IRD and is paving the way for future access to clinical trials.
• Fighting Blindness provides free counselling services to individuals/families living with eye conditions.
• Horizons – their support group for parents of children with sight loss – meet online second Thursday of each month.
• Census 2016 found 4,028 children from birth to 14 years had a sight-related disability. Fighting Blindness believes this underestimates the problem.
• Email [e-mail] or call 01 674 6496.