Alma Dawson, four, has nystagmus and Leber congenital amaurosis; her younger sister Suzie has the same condition. Her parents made adjustments at home but Alma would often be left out at nursery, as she couldn’t see when other children moved away from her. Here, mum Sophie tells their story.
“To me, having vision impaired children is normal and I don't really see it as a challenge. But I do worry about them being accepted by other children. It was just after Alma received her final diagnosis that I decided to call Guide Dogs and see what support they could offer. I spoke to Wendy, the national family support manager, who understood what we were going through and reassured me that children with a vision impairment can lead a full life.
“Wendy invited me to one of the family weekends, which was absolutely invaluable. As a new parent, you spend a lot of time at baby and toddler groups comparing your child, so just to be with other families in the same situation as us was great. It was so useful talking to experts to get their advice on play ideas and how to access the right education support, too.
“We went back for a second weekend after Suzie’s diagnosis, which gave us another opportunity to find out more about assistive technology and education support, but we’ve since been on lots more family days out. Alma loved her first trip to the pantomime, including a touch tour, while these events give her the chance to meet other children ‘who have a cane just like her’.
“Alma’s now at the age where she can engage much more with the other children. Although the girls have got each other, it's important they know there are other children like them, as it helps reduce any isolation growing up. The events also give me the chance to talk to other parents and build up a network of support.
“I’ve been able to meet adults with sight loss too, including members of staff, and hear about their lives. To see their positive outlook really helps. I now know that my children can do whatever they want – they just need support from people like Guide Dogs.”
If you’d like to book a family day out, or a place on one of our annual weekends, take a look at our list of upcoming events.