Alma's story

Alma, four, has nystagmus and Leber congenital amaurosis; her younger sister Suzie has the same condition. Their 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, 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 we could help the girls live their lives to the full, just like other children.

“Wendy invited me to one of the family weekends, which was exactly what we needed. 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 find the right education support, too.

“We went back for a second weekend after Suzie’s diagnosis, which gave us another chance 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’.

Just to be with other families in the same situation was great
Sophie, Alma's mum

“Alma’s now at the age where she can play a lot more with the other children and make new friends. Although the girls have got each other, it's great that they know there are other children like them who could turn into life-long friends. The events also give me the chance to talk to other parents and build up my 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 know that my children can do whatever they want –  with a little help 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.