Welcome to The Johnson's support page for Emma and Haley! Thanks for visiting and please take a moment to read our message.
Our Daughters have been diagnosed with Lebers Congenital Amaurosis (LCA). The next step in the diagnosis process is to pursue genetic testing. While we have not had the money to proceed with the tests, we have been seeking other means to have the testing done. Fortunately, both children's vision has degenerated at a very slow rate since birth. This leaves promising evidence that they might receive treatment before major damage has been done.
We've all heard the phrase "sight unseen", meaning to accept something without seeing it first. We have chosen this title for our page, not only because it is a little catchy, but also because this is exactly what we often must do when it comes to coping with the daily struggle of assisting two children with LCA.
We often hear the comment that you could never tell by looking at them (Emma and Haley) that they are visually impaired or in fact, legally blind. We must learn to trust- sight unseen- that the impairment is present even though we cannot always tell just by looking at them. It wasn't until recently that any one of us, except the ophthalmologist, was even able to see the condition of their retinas and (naturally) it can slip our minds that their condition even exists. As a member of their support group we must learn to intuitively step in and assist when necessary. This isn't always easy when (aside from a few problematic symptoms) their impairment is sight unseen to the rest of us. While they are being trained to ask for help, as we all know, asking for help is no easy feat. Especially for children who desperately want to prove that they can do for themselves.
As their parents, we have had to let go of some expectations for our children and in its place we have found the unexpected joy of discovering new hopes and dreams for them. Emma and Haley are two of the most talented and inspiring children we will ever have the chance to know and love. We have learned so much about life in this process of discovering and dealing with their disability. And to think that this is only the beginning!
We invite you to get involved today!
Many of you have joined us on our journey of discovery, sadness, coping, emotional healing and survival of this disease. We value your continued support and ask that you help to support the foundation that is advocating not only for our children, but all persons with retinal diseases.
The Foundation Fighting Blindness has given us hope and is our resource for the most current news and updates. Our local FFB chapter is an amazing source of knowledge and support that we continue to draw upon as well.
We have set our fundraising goal high and realize that in this time of economic hardship not all will be able to contribute. Please DO NOT feel obligated to donate, but DO sign our guestbook. And remember, it only takes a few small efforts combined to make a big difference!
Check out Team Optimistic!
Team Optimistic has been formed on behalf of Emma and Haley. We will raise funds and participate in the 2012 VisionWalk held here in Jacksonville. Want to join us?
For more information or to donate to the team visit our webpage at
Thank you for your support,
Angie, Jeremiah, Emma, and Haley