Tatiana tells the story of her son’s sight condition
31 August 2022
Khamani was born with a sight condition that caused him to lose most of his vision before he turned one. Thanks to Moorfields, some of his eyesight remains. Khamani’s mum explains how his sight loss has impacted him and the family, and their hopes for the future.
When Khamani was born, you couldn’t tell that he had a sight condition. But at about two months old, his parents noticed something different about his eyes.
He’d put his head back and look out the bottom part of his eyes, or they would go round in circles and wander from side to side.
Tatiana, Khamani’s mum
Soon, Khamani was diagnosed with a condition called nystagmus – characterised by ‘wobbly’ eyes.
What is nystagmus?
Nystagmus is an eye condition which causes involuntary eye movements.
The movement can be side-to-side, up and down, or in a circular motion.
Two types of nystagmus
- Congenital nystagmus: this type appears in the first few weeks of life
- Acquired nystagmus: this type develops later in life
There’s currently no cure for nystagmus, but glasses and contact lenses might help improve vision.
Nystagmus does not get worse over time and sometimes gets better.
After further tests, Khamani was diagnosed with another eye condition - Familial Exudative Vitreoretinopathy (or FEVR).
FEVR is is a rare genetic disorder of the retina caused by abnormalities in the development and maintenance of the retinal blood vessels.
Later, it was confirmed that Khamani had Norrie disease, which is recognised as a sub-type of FEVR. It is characterised by its heightened severity, displaying symptoms such as retinal detachment, abnormal blood vessel development, and progressive vision loss.
I think when I first got the news, I just zoned out.
After initially attending Great Ormond Street Hospital, Khamani was seen at Moorfields Eye Hospital by consultant Robert Henderson, who used a retinal camera to photograph and examine the back of his eyes.
Unfortunately, these photos showed that Khamani had lost a lot of vision. He was unable to see out of his left eye, and his right had about 30% of vision remaining.
Khamani has been coming to Moorfields for treatments since his diagnosis.
He’ll continue to have laser treatments on a regular basis to help prevent damage to the retinal blood vessels in his eyes.
Moorfields were very attentive to the fact that he’s a baby, he gets tired, he gets groggy. It’s quite uncomfortable for him but they were all really good with him.
Khamani’s older brother, Kai, has been accompanying them to lots of his appointments. It has been confusing and difficult for him at times, but Tatiana says he’s taken it all in his stride and is a huge support to his little brother.
Khamani’s love of lights
Khamani enjoys looking at lights - the lights in the home, flashing lights, toys that light up, and even chandeliers.
He’s obsessed with lights. I feel like if it’s easier for him to look at those things because, even though he can’t see clearly, he can see those things.
However, FEVR can make the eyes very sensitive to direct sunlight, which can be painful, so Tatiana takes care to keep him away from it when possible.
Keeping his remaining vision
Tatiana of course worries about Khamani’s sight loss getting worse.
As a mother, I have these thoughts where I imagine that one day he wakes up and doesn’t have any vision and it’s the last day that he sees his brother, or the last day he sees his mum or dad.
Every morning, Khamani and Tatiana have a routine. She sticks out her tongue and he starts laughing. For Tatiana, it’s a reassurance that his vision is still there.
What does the future hold?
Robert Henderson and Khamani’s family have hopes that he can have some independence as he grows older.
We hope he’ll be able to lead a life where he can be slightly independent, where he can make out objects, and he can manoeuvre and get himself around.
Whilst the future is uncertain, Tatiana is very grateful that his condition was picked up when it was. Because they were able to diagnose him, Moorfields have been able to prevent further sight from being lost.
If Robert Henderson hadn’t picked up on it when he had, he probably would have had no sight.
Tatiana told Khamani’s story as part of our 2021 winter fundraising appeal. Thanks to them, we’ve raised enough funds to purchase a brand new retinal camera for Moorfields – the same instrument that helped diagnose Khamani’s condition.