George and Nicola's story

George and Nicola were both born with Axenfeld-Rieger syndrome (ARS), a rare genetic disorder that affects the development of the front part of the eye. George had cloudy corneas and, when he was very young – around 16 to 20 weeks old – he underwent corneal transplants. Unfortunately, one of the transplants failed before he turned two. As a result, George is now registered as severely sight impaired and uses a long cane, though he isn’t keen on using it.

He participates in lots of activities outside school and has a busy, fulfilling life surrounded by friends. He takes piano and swimming lessons, and is about to start scootering lessons. As his mum says: “He’s absolutely obsessed with his scooter!”

George currently attends a mainstream school, though his parents are considering moving him to a special education school in the future – perhaps in a few years’ time. Despite the challenges, George is thriving. Nicola, who works at the same school as a teaching assistant, plays a key role in advocating for his needs, all the while balancing the demands of the family’s busy life with George’s dad.

Unfortunately, George’s vision impairment began to affect his emotional well being when he reached an age where he wanted more independence. He struggled to understand why he did things differently to his friends. His frustrations were centred on tasks like using assistive technology, working at a different pace in school, or requiring help to go to the bathroom in public places. These were the kind of things that led George to feel anxious and made it hard for him to express his emotions.

Nicola, already knowledgeable about the challenges brought by vision impairment due to her own experience with Axenfeld-Rieger syndrome (ARS), had been able to handle many of the challenges the family experienced very well, but the emotional strain George was undergoing needed specialist support and she knew that she and the rest of the family couldn’t provide it on their own.