My son Micah, who is 13 years old, was born totally blind, due to an extremely rare genetic condition called Norrie Disease.

As well as being blind, Micah faces many other challenges caused by the condition. He is autistic, has global developmental delay, learning difficulties, and epilepsy. But by far the scariest thing is that he will almost certainly begin to lose his hearing as well, and that could start at any time!

Despite all the challenges and barriers he faces every day, he is one of the happiest children I know and he takes great joy in listening to sounds like birds, sirens and lawnmowers, as well as having a passion for music and playing the keyboard. Sound is his world. If he loses his hearing all that joy will be taken from him and he faces the prospect of slipping into a world of silent darkness. This is the terrifying reality for children with Norrie Disease.

On Friday 26th September 2025 I will be hiking from the base to the summit of Montserrat mountain just outside Barcelona to raise money for the Norrie Disease Foundation, and help to fund critical research into a treatment for the devastating hearing loss that affects people, like my son, Micah, who are already blind

The Norrie Disease Foundation and Great Ormond Street Hospital Institute of Child Health are carrying out research into the specific hearing loss in Norrie Disease, in order to try and find a treatment. However, funding for these types of very rare diseases is incredibly hard to get. That is why I will be climbing the mountain in September.

Any donations, no matter how small, will make a difference to the Norrie community and bring us a step closer to preventing the devastating hearing loss. Even if you are not able to donate, please share my story so we can reach more people. Thank you!

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