A 13-year-old boy from London, who sees the world in monochrome, is lending his voice to a national campaign demanding greater awareness and investment for sight loss research. Avi Krishnan's unique perspective highlights the urgent need for scientific breakthroughs.
Living in a World Without Colour
Avi Krishnan was diagnosed with achromatopsia at just two and a half years old. This inherited retinal condition, affecting roughly 1 in 30,000 people globally, means his cone cells do not function correctly. For Avi, this translates to a life viewed in shades of grey, significant light sensitivity, and reduced visual acuity.
"I can't see any colour and in general I can't see as far away as other people can. And when it's very bright, it's a bit difficult to see," Avi explains. The festive season, with its vibrant decorations and twinkling fairy lights, presents a particular challenge, as the bright lights cause him physical discomfort.
A Family's Journey to Diagnosis and Hope
Avi's parents, Janki and Anant, first suspected something was amiss when they noticed his eyes wobbling—a symptom of nystagmus—and developmental delays before his first birthday. Despite initial dismissals from medical professionals, their persistence led to a referral to Great Ormond Street Hospital.
Genetic tests revealed the cause: Avi had inherited two separate faulty genes, one from each parent. "We were told that he would only see in shades of grey. It came as quite a shock," recalls Janki, who holds a genetics degree. The prognosis that he would likely never drive felt particularly devastating at the time.
Janki often encounters poignant reminders of her son's condition. "Every time I see a rainbow; my instinct is to point it out to the children. But then I do have to check myself because, obviously, Avi can't see the colours."
Pioneering Treatment and a Drive to Give Back
In 2020, Avi became one of only nine children in the UK to receive a pioneering gene therapy for his specific gene defect at Moorfields Eye Hospital. The trial, led by his consultant Professor Michel Michaelides, was funded by an initial grant from the charity Fight for Sight in 2010.
The experimental treatment has yielded a marginal improvement in his injected left eye, with slightly better perception and reduced nystagmus and light sensitivity. For the Krishnan family, participating was never in doubt. "Research takes time and money and may not work perfectly or at all, but we just felt that we couldn't miss that opportunity to try," Janki states.
Beyond the trial, the family is deeply committed to advocacy and fundraising. Last year, Avi, his brother Aarav, and father Anant collectively swam 24km over 30 days, raising £2,500 for Fight for Sight. Both boys have also spoken at their school to raise awareness.
"I’m at the stage where I can give back," says Avi, demonstrating remarkable maturity. "Fight for Sight is a wonderful charity with a mission to stop sight loss through pioneering research, and we need funding to get there." His brother Aarav, his biggest supporter, adds: "The world isn’t built for people like my brother, even though he’s brilliant."
The Call for Crucial Funding
Keith Valentine, CEO of Fight for Sight, expressed profound gratitude for the family's efforts. "Sight loss research has come on in leaps and bounds in recent years, and we are confident that the development of AI will quicken its pace considerably," he said.
He stressed that while there is optimism, more funding is desperately needed to accelerate progress. The charity's Christmas appeal aims to channel resources into cutting-edge gene therapies and other research that could one day restore colour and clarity for people like Avi.
As Christmas approaches, Avi focuses on the joys he can experience. He says the season "has a certain smell" and he is excited about the gifts to come—a reminder that his world, though visually different, is full of anticipation and family love.
