Emma Amos, 17, was born with a visual impairment, but she was not officially diagnosed until she was two. After several tests doctors told her mother, Julie that she had cone-rod dystrophy, a group of inherited eye disorders, and nystagmus, which is a rhythmical, repetitive, and involuntary movement of the eyes.
Emma’s sight loss means she wears glasses every day, specifically with tinted lenses due to her sensitivity to light, and she uses a long cane to aid her mobility. Julie said learning of Emma’s hearing loss was difficult to process, as she already had visual impairment, but in 2021 they discovered her conditions were linked to a rare genetic disorder known as Alstrom syndrome, and this has made it “easier to accept”.
While Emma faces daily challenges, such as her mobility, crossing the road, travelling on public transport and walking on busy pavements, her experiences in “the real world” have made her more resilient and she wants to prove that she is not hindered by her conditions.
