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One-year-old twin boys have been diagnosed with a rare eye disease that causes sensitivity to light and impaired vision.
Jessica Lunn and Liam Lunn live nearby doncaster, south yorkshireIn October 2024, they welcomed their sons, Sam and Tommy, four weeks prematurely after being conceived through in vitro fertilization.
Tommy spent approximately 36 hours in the NICU (neonatal intensive care unit) Both appeared to be happy and healthy little boys before the family returned home.
However, during their six-week check-up, doctors discovered something was wrong with their eyes because they were “constantly moving.”
Doctors diagnosed them with nystagmus, a condition that causes rapid, uncontrollable eye movements, and referred them to hospital for further testing.
There, it was discovered that Sam and Tommy had ocular albinism, a rare genetic disorder that causes a loss of pigment in the iris and retina, resulting in vision impairment and light sensitivity.
“We looked at each other: ‘That sounds painful. What is that?'” said their father, Liam, 32.
Doctors explained that the twins’ eyes are unable to adapt to light, meaning bright lights can cause glare and make it difficult for them to see, and the condition can also lead to increased sensitivity to light.
There is no cure for ocular albinism, but parents are relieved to know that the condition can be controlled and does not get worse.
“Obviously, you worry, you worry, it’s your child,” Liam said.
“But we knew we had a good circle of support around us, and then obviously explaining it to people, and then people found it interesting and they looked into it themselves.”
“They’re happy, they’re healthy – they’re very happy, rambunctious babies! It’s just that we have to take more care of their eyes.”
Mum Jessica, 34, has several relatives with ocular albinism, so she knows what to expect.
She knew from relatives’ experiences that the prognosis was generally good and that “they would be fine and they could do almost anything they wanted to do, give or receive, except drive.”
“But obviously it’s still a big shock,” she added.
After the diagnosis, Jessica “drilled down into the help available and what options were out there” to help prepare herself and Liam for what was to come.
Liam explains that sometimes the twins need to sit in a dark room – especially if their nystagmus makes them feel like the earth around them is moving and vibrating.
The family also installed color-changing light bulbs in the home, giving them adjustable lighting that can be dimmed to make the boys more comfortable.
However, they knew that Sam and Tommy would need sturdy glasses as they grew older and that they would need to adjust throughout their lives.
The parents explained that the twins’ visual impairment was already evident.
“I’ve gone to pick them up from daycare a couple of times and it’s a huge room – I’m shouting to them and they’re looking around to see where I am,” Jessica said.
“At one point their grandfather was a meter and a half away and he was wearing orange high-visibility gear and they looked in his general direction but they couldn’t focus and see him clearly,” Liam added.
“They were playing and he didn’t say a word. After a minute he said, ‘Okay, kids, grandpa is here,’ and then they looked around and knew he was there and came towards him.”
As they get older, Jessica and Liam hope that Sam and Tommy can still live fulfilling lives and that this situation doesn’t hold them back.
“I guess it depends on their confidence…Right now, they don’t seem to care,” Jessica said.
“To them, it’s normal. So I don’t think it’s going to stop them from doing anything because that’s how they see the world.”
She added that they were “more cautious when going out”, making sure the boys wore sunglasses and hats.
“Currently, they don’t like them,” she explained.
“We lost so many hats, I turned around and all of a sudden they weren’t wearing their hats anymore, they took their hats off and threw them on the floor.”
Although Sam and Tommy attend a mainstream local playgroup, they are the only children in the group with vision loss.
Jessica began to compare their progress with the milestones of other children their age, which worried her, but when she discovered My Playtime – an early years group for children with visual impairments – she accepted that the boys were going their own way.
Every two weeks Jessica takes the twins to My Playtime, an event for visually impaired children aged 0 to 4 years and their parents, carers and siblings. Free services provided through The guide dog The Society for Blind People, one of the UK’s leading blindness charities, offers fun, supportive group activities including sensory play, music, movement, crafts and stories.
“When we go to My Play Time, they’re not the only ones,” Jessica said.
“You think: ‘Well, they’re not really behind.'”
Jessica added that the classes are not only a great way for the twins to socialize with other children with visual impairments, but also for her to connect with other parents of children with visual impairments.
“Your parents stay too, so you talk to them about it and you get a bigger support network and people understand what you’re going through,” she explained.
As an added bonus, My Play Time gathers Jessica and the boys from home and takes them to classes, which is great for them since Liam is often away working and Jessica doesn’t drive.
If they hadn’t provided transportation, they wouldn’t have been able to leave at all.
During their sessions, Sam and Tommy enjoyed sensory play and baby yoga sessions.
“The boys absolutely love this,” Jessica said of baby yoga.
“They were giggling and stuff.”
Since Sam and Tommy will be able to continue participating in My Playtime until they are four years old, Jessica hopes they will be able to develop lasting friendships with children who understand their way of seeing the world.
She also hopes the children will be able to attend mainstream schools when the time comes, but knows that whatever their future holds, the family has a fantastic support network around them to help them weather any storm.
Learn more about guide dog‘ Support for children and young people here.