Ivy has scrunched her face up for as long as we can remember when in brighter environments.
Ivy was diagnosed with nystagmus, corneal dystrophy, photophobia and long-sightedness in August 2024, aged 19 months. I wouldn’t say it was a shock because we were already well aware of her eyes wobbling, her squinting, her distress when in bright places. But to have it confirmed and to be told your baby girl is now “registered as partially sighted” was a blow. To hear talk of electro-diagnostic testing being done, referrals to a number of different services, talk of DLA; it was a lot to process and I’ll be honest in the fact that I’ve struggled.
Ivy has scrunched her face up for as long as we can remember when in brighter environments. We and others thought this was just her, just what she did. I lost count of the amount of people who would say “ooh, that’s a funny face” whenever she did it. The fact was that she was squinting because of the light. Now that we know that, it’s glaringly obvious as it almost always only happened in bright environments.
Ivy’s first pair of glasses did not last long. The prescription was +4.5 which we think was too strong too soon when she wasn’t used to wearing glasses. She ended up breaking them in frustration.
We recently took her to Manchester Children’s Hospital for electro diagnostic testing which didn’t go very smoothly. However, since reducing her prescription, she is doing amazingly with her glasses and wears them for the majority of the day.
The glasses photo is how she’s doing right now. She’s amazing us all every single day 🙂