Jeans for Nystagmus Genes: Delilah’s story

Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in return for a donation

  • When Delilah was four months old, her mother Sarah noticed a tremor in her eyes. The baby went on to be diagnosed with nystagmus, a complex visual impairment causing involuntary eye movements and affecting vision.
  • Delilah is lively and confident but her parents sometimes worry because her depth perception is limited, which means she may be more likely to trip and fall.
  • There’s no cure for nystagmus and Delilah’s parents aren’t sure how it will affect her in the future but at the moment nothing stops her – she loves princesses, camping and dancing.

Four-year-old Delilah was diagnosed with nystagmus, a congenital disorder affecting the eyes. As is often the case with children with the condition, she was diagnosed after her mother, Sarah, noticed her eyes appearing to ‘wobble’ – she also has a retinal fold. Delilah’s a happy, confident little girl who loves school, dancing and outdoor activities – but she does have some visual impairment and there’s currently no cure for nystagmus.

All seemed well when Delilah was born. But when she was around four months old, her mum Sarah, 45, who owns a cleaning business, noticed her daughter’s eyes were moving around randomly. ‘I had no comprehension what it was, but when I spoke to family members they said it was just a baby’s development and she was trying to focus,’ says Sarah. ‘But my mother’s intuition told me to check it out. So we went to local children’s centre to see their ophthalmologist a couple of months later and they said she had nystagmus.’

Sarah and her husband, Rob, 48, who is in the police force, had no idea what that meant. ‘We both wear glasses for reading or seeing telly but that’s just age-related and nobody in our family has anything like this.’ From that moment, the couple went on a huge learning curve.

‘It was scary at the start,’ says Sarah. ‘The opthalmologist wasn’t a specialist in nystagmus so all he could advise was not to google and to wait for a proper appointment. But of course we looked it up and found the Nystagmus Network.’ Sarah and Rob felt disheartened they had been left to learn about the condition themselves. ‘The children’s centre just sent out a general blurb, which, scarily, focused on blindness, but we later found out that wasn’t right. At the time, though, that really scared me.’

The family began to get more involved with families affected by nystagmus so they could learn more about the condition. ‘It was so hard to know what was going on  – was she taking longer to reach milestones because of nystagmus or was it all just part of her?’ Sarah says.

It was when Delilah was referred to Manchester Eye Hospital that she began to receive more individualised treatment. Doctors there diagnosed retinal fold – an abnormality in the retina caused when a blood vessel is left behind when the eye is developing in pregnancy. By the time of birth these have usually disappeared but sometimes the vessel is left, and in Delilah’s case it’s attached, giving the appearance of a fold, and making her vision in the left eye very limited.

‘The doctors at Manchester helped us see Delilah as her own person with her own condition,’ says Sarah. ‘They carried out lots of tests to check the connections between Delilah’s eyes and brain and that was all fine. They prescribed her glasses, which have helped a lot. And in fact her eyes don’t shake as much as when she was little, although I notice the tremors more when she’s tired or stressed.’

None of it stops Delilah, though. ‘She is a rocket – she does everything at 100mph,’ laughs Sarah. ‘It’s so funny because her older sister, Lola, is a lot more cautious. She’ll be thinking about it and Delilah will have already done it! When she started school we found her depth perception wasn’t brilliant, which means she might not always see steps. On the one hand, it’s great she’s so confident, but we have tried to help her learn to look around first and take care. The school have been great – they’ve painted the lower stair rails bright yellow to give her something to focus on.’

Now Delilah’s reading and colouring in, the family have found it helps her to have a book propped up on a reading slope so she doesn’t have to hunch trying to focus. And she has a visual support worker who goes into Delilah’s school to advise.’

‘We don’t know what the future holds,’ says Sarah. ‘It’s rare for someone with the condition to learn to drive but who knows where we’ll be in the future. She may need bigger fonts when reading and so on, but until she’s doing it we can’t pre-empt it.’

But right now, nothing stops Delilah. ‘She loves dancing, drawing and singing, and is really energetic and outdoorsy,’ says Sarah. ‘She can’t wait to go camping in the summer. And she loves princesses!’

Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders. Funds raised will go to the vital care and support they need.

Jeans for Genes Day is from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school and make a donation. Sign up for your free fundraising pack at:

Nystagmus Network is a Jeans for Genes Day 2019 grant charity. Our grant funds an activity day for children aged 5-15 with nystagmus. Children from across the UK will attend a day of creative play, looked after by adult facilitators who understand the condition, how it impacts on both vision and social interaction.

You Might Also Like