Thank you so much for taking the time to read into Norrie Disease and what difference you can make to those who are affected by it! 

Norrie disease is a very rare genetic condition, that prodominantly affects males, where newborns are born without sight. People with Norrie Disease later develop a secondary symptom of progressive hearing loss, with a risk of slipping into a world of silent darkness. 

This disease approximately affects 1000 people worldwide and it is believed 40 people in the UK. We are working alongside one individual called Cameron, who has Norrie Disease, and this is his story:

Cameron was born in December 2012 and it wasn’t until he was 8 weeks old that parents Carla and Adam realised that something was different about their baby boy. He was diagnosed as blind at first and then about 3 months later he was officially diagnosed, through genetic testing, as having Norrie Disease. 

At the age of 3 Cameron became profoundly deaf in his right ear, meaning he could only only process sound through his left ear. At the age of 5 he developed a moderate loss in his left ear, which he currently uses a hearing aid for. There is no known timescale for hearing loss, so Cameron remains at risk of completely losing his hearing at any time during his life. 

Norrie disease has affected Cameron in more than just multi-sensory impairment. At the age of 5 he was also diagnosed as autistic, leaving him non-verbal and with profound learning disabilities. He also experiences hyper-mobility, which amounted to Cameron needing tendon release surgery on both legs to help him walk. He is still a part-time wheelchair user, but one of the profound moments of his life was walking his mum down the aisle on her big day. 

Aged 4 Cam was diagnosed with ketotic hypoglycaemia, which meant he underwent surgery to insert a feeding tube. The feeding tube inserts directly to his stomach, allowing him to receive vital nutrition and to regulate his sugar levels. 

Cam communicates through tactile touch. Tactile touch is an accumulation of British Sign Language, on-body signing and through the sense of touch itself. 

Cameron is a happy and bubbly 10-year old child who despite his challenges, smiles through it all. He is a thrill-seeker who loves to experience life through his other vital senses, so please help us to save one of them. We are raising desperate funds for the Norrie Disease Foundation (NDF) who are leading the research into saving the progressive hearing loss for individuals with Norrie Disease. 

The challenge, named ‘The Race Against Silent Darkness’ is to get Cameron to the top of Ben Nevis on May 27th 2023 (the highest mountain in the UK at 1344m) and for him to stand on the trig point. This would effectively, in that moment, make him the highest person on land in the UK. Cam will be carried up by dad Adam and 100-Strong founder Matt, and back down the mountain. Once the team reach the bottom of the mountain, team 100-Strong will then cycle the nearly 500 miles home to Bristol over 3 days. With the challenge ending as soon as they get home on May 30th 2023. 

All funds raised go directly to the charity and thereafter directly into the research needed. Time is against us to find the answers before Cameron himself slips into a world of silent darkness. Please help us by donating to our cause but if you are not in a position to help then don’t worry, you can still help! Sharing the cause and spreading awareness is imperative and we love each and every person who can take the few seconds to share our cause. 

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@100strongofficial

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@norriediseaseuk