We have two beautiful girls called Ella (age 6) and Lola (age 2). They both have Oculocutaneous Albinism and Nystagmus.
Ella was diagnosed at 3 months old with nystagmus at a regular check up and Lola I noticed at a few weeks old as I knew what to look for. When Lola was diagnosed Ella said to us: “We can both support each other now”.Â
Ella struggles to see far away and both girls have Oculocutaneous Albinism so they can be sensitive to sunlight. They are doing amazing despite their diagnosis and most people have been surprised when I’ve told them Ella is registered as partially sighted.
Ella has regular support from a vision worker at school. She has text made larger for her and recommendations in place to help her. Lola also has support at nursery. We’ve also had support from the Nystagmus Network and their consultant which we are grateful for.Â
We are so proud of the girls and despite needing some support they certainly aren’t letting nystagmus hold them back!Â