Blindness awareness month and Finley

Today's topics - What Finley's retinas look like and why does she wear glasses

When Finley was diagnosed, the way we first found out something was wrong was a picture the eye doctor had taken of her retinas.  The retina is the back part of the eye that receives all the information to tell your brain to see.  Light bounces off the retina, and that gives you sight.  Wala. 

It is obviously more complicated, but this is what you are getting from me.

So - here is a picture for reference.  When the doctor's look at Finley's retina, they see the picture on the right.

 

The retinal should be pink and happy.  Finley's is gray, black in spots, and complicated.

What the doctor's look for each appointment is if the black areas are getting larger - the black spots that is.  If they are increasing in size which means more of her retina has died off.

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Finley does wear glasses.  You will see them in (most) of the pictures we take of her.  What some people don't know is that the glasses don't actually correct her vision.  There is just plain old glass where prescription lenses would be.  We have had several doctors try prescription lenses on her, and they don't do anything for her, or actually make her vision worse.  But the doctors wanted her to have her eyes protected and also her remaining vision protected, so we ended up with the glasses she wears today.

Part of the LCA diagnosis is eye pressing.  The kids will press on their eyes, or rub their eyes.  Some doctors think it is the kids trying to clear their vision, but really, there isn't much research on it.  We know of kids who press almost constantly, and they have no vision, so who knows.  When Finley was a baby, she rubbed her eyes quite often.  We thought she had allergies - it was pretty noticeable.  Now we know why she did it.  She will still do it from time to time - especially if she has her glasses off.

So the doctor said that glasses would help stop the eye pressing -she would reach for her eyes, glasses would be there, and down goes her hand.  And it does work! 

The other thing is - her type of LCA causes cell death from light.  All kinds of light - natural and unnatural light.  So there is a tint on her glasses for that reason.  She wears the glasses at all times while she is indoors, or low light situations outdoors.  During day time, she wears dark sunglasses outdoors - even in the winter.  We even have a special pair she wears when she plays in the snow for snow glare.

We hope with these protections, we are slowing down the death of the cells in her retinas and preserving her vision for gene therapy.  The more live cells she has when treatment time comes, the more of her vision she will retain.  

We can't express enough how important it is to protect your eyes.  EVERYONE's eyes.  When you are gardening, or doing any kind of yard work, when you are outside, driving, etc.  These are the windows to the world.  Protect them.