“It’s so special to share a story and not have to ask for help” – Lorna and Rex’s Story
20th November 2023
The simple act of picking up a book and reading it to your child, is something that most parents take for granted. But, for Lorna Davies, it isn’t that simple.
Lorna was born with nystagmus and optic atrophy and her sight has gradually become worse. So much so, that picking up a traditional book and reading it to her sons is something she can no longer do without help.
“When I was a baby, my mum noticed my eyes wobbling around the time of my first birthday. My parents took me to the doctor and realised I had optic atrophy – which means my optic nerves are damaged and I was registered as sight impaired,” she says.
“When I was first diagnosed, I was told I’d be partially sighted and so I got through primary school fine by using some digital technology to enlarge the print along with things like sticker-lined paper. My sight was good enough to attend mainstream school with some small adaptations.”
It wasn’t until Lorna was in her 20s that her vision seriously deteriorated, and she realised she couldn’t see things as she used to.
“I remember it was shortly after I gave birth to Rex that I noticed a huge change with my eyes,” she says, “Things that I used to be able to read and see clearly were a real struggle suddenly. As I had been told that my eyesight was stable from a young age, it was very distressing and a real shock to find out otherwise. I don’t want that for Rex.”
Like his mum, Rex – now seven – was also born with nystagmus and optic atrophy and has been registered as visually impaired.
“Rex had the same wobble as I did as a baby, so we knew we had to get it checked out,” Lorna says.
“He can see but can’t take in too many details and it takes him a bit longer to focus on things, especially if you point them out to him. He has fancier versions of what I had at school to help with his learning. Technology is advancing all the time, so he doesn’t struggle too much.”
Being a blind mum with a visually impaired child comes with many challenges. But Lorna credits Living Paintings in bringing her the simple joy of reading to her son.
“It’s been horrible for me losing my eyesight as I haven’t had the same experiences with my children as other parents have. One thing that I always find rubbish is that I can’t just grab a book off the shelf and read it. When Rex was little, I would memorise short stories to tell him but it’s not the same. I can only memorise so many,” she says.
Lorna first discovered Living Paintings through the online blind community and at first was sceptical about the impact it would have on her and her son. “I learned about Living Paintings when Rex was six and because he could see, I wasn’t sure it was for us. But the more I heard about them, the more I was interested, and I decided to give it a try. I’m so delighted we did,” she says.
From the very first tactile book, Lorna could tell that it would become an important ritual between her and her son.
“It’s so special for me to be able to pick up a book and share it with Rex and not have to call on my husband for help,” she says. “Now I can share stories with my son, and I can visualise details that I wouldn’t normally be able to, so it’s inclusive for us both. My only regret is that we didn’t try Living Paintings sooner and that the service didn’t exist when I was a child.”
Like most seven-year-olds, Rex has favourite stories and loves to share his special books with his classmates.
“Living Paintings sent out a free coronation gift which featured a tactile version of St Edward’s Crown along with a QR code with audio and Rex loved it! He brought it into school and was so proud to show it off in class. It was great for me too as I could feel what the stamp looked like – it suddenly wasn’t just a block of colour on a letter,” Lorna says.
“In one of the bundles, we received the book, Malala’s Magic Pencil by Malala Yousafzai and that was special to Rex as he had read it in school and it added an extra layer for him to be able to touch some illustrations that he couldn’t quite make out in class.”
As Rex gets older and understands the severity of his and his mum’s condition, he’s been active in fundraising to help more people who are visually impaired.
“Rex was asking questions about my guide dog and when he realised they could be expensive, he wanted to raise money for the charity by running a 3km muddy obstacle course with his dad,” says Lorna.
“He wanted to raise £100 but managed to raise over £3000, which means he’s been asked to name a guide dog puppy. He’s chosen Kal’el which is Rex’s middle name and Superman’s birth name.”
Although Rex doesn’t have Superman’s X-Ray vision, he is a fearless fundraising hero and Lorna is hoping that he’ll continue to be brave when it comes to his diagnosis.
“We don’t know what the future holds for Rex but we need him to be prepared to lose more of his sight. I was told that my eyes were stable as a child and so it was harder for me to accept that I was becoming blind as I wasn’t expecting it. My dad also lost his sight and may have been misdiagnosed so the condition is likely hereditary,” says Lorna.
“I feel very fortunate for Living Paintings that make books inclusive and accessible for me and Rex and it gives us something lovely to enjoy together.”