Our baby boy, Max, was born with a rare genetic condition called Norrie disease.

For children like Max, Norrie disease causes blindness from birth and progressive hearing loss as they grow. It affects fewer than 500 people worldwide — which means families face this journey almost entirely alone, and treatments are rarely prioritised by industry.

But there is real hope.

At Great Ormond Street Hospital in London, an exceptional team of doctors and scientists is developing a ground breaking gene therapy designed to slow, prevent, or even significantly reduce the hearing loss caused by Norrie disease. For children who are already blind, protecting their hearing can transform their entire future — their communication, independence, education, and quality of life.

Because this condition is so rare, pharmaceutical companies will not fund the research.

There is simply no commercial incentive, which means progress depends on the generosity of people who believe every child — even one in a million — deserves a chance.

This is where we need your help.

Your support will directly fuel the work of the dedicated team at GOSH, pushing this promising therapy closer to the children who need it. Every donation brings us a step closer to giving Max, and others like him, the best possible future.

If you’d like to learn more about the research, you can read about it here:

https://norriedisease.org.uk/research/research-projects/

Thank you from the bottom of our hearts for helping us fight for Max's hearing - and his future.