As I sit here this evening, looking at our website and reeling it all in; I think about how unreal it all feels. It has been almost 3 years since we received the news about the RP, and yet, it still feels like it can't be true. It can't be true that Ethan will lose his vision one day. He is too silly, too smart, too funny, too lovable, too outgoing... you just never think that something like this will happen to you or to your family.
On the other hand, I am friends with a lot of very inspiring people on Facebook! Facebook may have it's downfalls, but it offers our family a way of connecting with people from all over the world that have Retinitis Pigmentosa, or other blinding diseases. It gives us a sense of encouragement to see people with low or no vision doing amazing things such as hiking, climbing mountains, and running in marathons! These people aren't letting their loss of vision hold them back. I can only hope that we can instill these same values in Ethan so that he too can accomplish the unthinkable!
We have to continue to lean on God and know that what Ethan may lack, He will provide. Ethan will always have just what he needs, and that is very comforting to me.
We are going to be taking lots of family trips this Summer and Fall, as we have just updated our camper! We'll be sure to post lots of pictures!!
I am so glad that you have decided to visit our web page! My husband and I were devastated when we learned about Ethan's diagnosis. We have come a long way in the last 3 years and have decided that we aren't going to let this beat us down. Building this web site is an important way for us to be able to share our story with others and gain awareness around the globe about retinal diseases. The Foundation Fighting Blindness, which we work closely with, is so close to a cure!! There is even currently a gene therapy being used to help improve and/or prevent vision loss in patients with a disease very similar to Ethan's. We hope that through our endeavors we will be able to raise enough awareness to help fund the research that will someday save Ethan's vision too!
Please feel free to look around and contact me with any questions you may have. We are very open about Ethan's diagnosis!
I am the proud mommy of Ethan! My husband Jason and I decided to start up this web page as a way to stay connected with our friends and families and share our story!