It has happened. We knew it would. We thought we’d have more time. We don’t. Eme’s vision has deteriorated to her only being able to detect hand motions in her worst eye.
So many kids & young adults hold on to their vision until adulthood. LCA leaves them something to work with – what this mom has learned to call “functional vision”. That “functional vision” thing is huge. It makes a tremendous difference in the lives of blind kids. It’s the difference between being in the dark with a flashlight or being in the dark without a flashlight. Some flashlights are better than others, but a flashlight is a flashlight.
From the day of her genetic diagnosis with Lebers Congenital Amaurosis (LCA-CRB1), we have worked to get a treatment developed for her very rare inherited condition. We knew a treatment was possible. Anything is possible with science. A treatment just hadn’t been developed…yet. Who wants to finance the development of a treatment that would only impact about 300 people in the US? No drug company I know of would take on that burden. There’s no money in it. So what’s a parent to do?! We need batteries! Bulbs!! New flashlights!!!
We faced reality. Our little girl was going to go blind. So, we taught her how to be blind. It’s been a wild ride, but our #littleblindgirl is all good. In fact, she’s much better at dealing with the fact that she is blind than the rest of us. We’re the problem. We’re the ones that are mourning the loss. We are the ones that cause problems. She’s all good. Sure, she gets frustrated from time to time with certain things. But who doesn’t?
So what do we do? Her fully sighted family. We wisk her away to a different part of the world to “show her the world” before it’s too late. Before all of her vision is gone. We need for her to see things that are very different from what she has seen in her house and yard in Virginia – or on her family trips around the southeastern United States.
Yes. We took off to Hawai’i.
For. The. Entire. Summer. 😎🌴🌊🐠🐚🐙🐡🌺