Isla’s Current Vision
I thought now might be a good time to address a question we get asked about a lot: Isla's vision.
There are some people who do not realize she has vision loss and there are some people who think she is "black out" blind. I want to share this information because both are incorrect. By knowing exactly where she is at with this we can help her out tremendously.
Isla has lost her central vision and relies solely on her peripherals to see. Along with her central vision gone she also has lost the upper right hand side (think 12-3 o'clock) so she generally looks up and to the right to look at something. Her vision is currently clocked at 20/250 on top of that. While this does technically make her legally blind, we choose not to use that wording as I feel that it is misleading and not the most accurate way to describe her. We prefer to say "vision impaired" instead. When people hear "legally blind" they think completely blind and that just isn't the current case for Isla. She is still very much a SIGHTED child. While her vision is very strained and has serious limitations, she is still able to walk, run, play, etc. completely unassisted. She is also able to watch TV, play games, and read with the help of large fonts and large screens. It is SO EXTREMELY important to me that she is not treated like a disabled or sick child, because she is neither.
Some of her limitations come with details though. She is no longer able to recognize people's faces from a normal conversational distance. Even up close to my face she has been using her hands to feel my face to see if I am smiling when she tells me a joke. One HUGELY helpful thing everyone can do is to please introduce yourself to her when you see her. She can't see and remember faces like we can so voices and names surely help her feel less confused or awkward. Also make sure you address her before you start talking to her because again, she doesn't have the benefit of visual prompts like we do. It's been an adjustment for us but I can see how much these little things help her.
I am attaching a video I took on Halloween because it gives a pretty good representation of how amazing she is adapting and how she uses her vision to work for her.
We can't wait to see everyone at her upcoming benefits and I just can't thank you all enough for being so kind and compassionate and generous and for helping us on our journey to cure Isla. Not a day goes by where I don't know in my heart that Isla will be one of the first children to BEAT BATTEN!
Edit to add: At the rate of decline we have seen this year without treatment Isla would lose the rest of her functional vision by this time next year, if not sooner. Thanks to our amazing doctors in Iowa we have started Isla on a medication that will hopefully slow her rate of vision loss and give her one to two more years of usable vision. Nothing is guaranteed, but it feels good knowing we are at least trying something!
