A fellow MOM just recently found out that her daughters, who have LCA, have such a rare form that doctors can't identify it. She was hoping to hear that they had the kind that has already been through a clinical trial with positive results. At least, that outcome would provide hope for a cure sooner. Unfortunately, many moms get this kind of news. These diseases are so rare. Many people know they have a retinal degeneration but don't fit into a specific identified disease. It is extremely frustrating when you just don't have the answers you want.
It's hard but we have to keep going for our kids. We have to be positive for them. We have to make sure they never give up hope of a cure, while at the same time help them accept the reality of their vision loss. No matter how tired we are, we can't stop. We watch our kids struggle. My son has to read six books this nine weeks. Most of them we can download on his iPad and he can make the print as big as he wants. He is reading To Kill a Mockingbird right now. You can't download this book in iTunes. I couldn't find it anywhere electronically. So, I ordered him a large print book. After he reads for an extended period of time, he rubs his eyes and complains of a headache. He can't stop reading though. There is a time limit.
Two major events for the Foundation Fighting Blindness (and MOMS for Sight) are over and part of me says it's time to rest. The problem is the "MOMS" are so dedicated, there's no such thing as rest. Black Ties and Blindfolds was a huge success and thanks to all of the support, MOMS for Sight was able to contribute over $6000 to fight blindness.We had a great time for a great cause and are already preparing for next year.
Two MOMS co-chaired the 2013 VisionWalk. We helped raise over $107K! We had over 460 walkers. It was a great day and raised the spirits of many participants. This was the 5th Jacksonville Walk and was the best over.
Now we ask, "What's next?" We are tired. We are worn out. We accomplished a lot but there is still so much more to do. We need to raise more funding for research so that no other mother has to sit at her desk feeling defeated and hopeless because her childrens' disease can't be diagnosed or worse yet, can't be cured. Remaining hopeful is hard but there is simply no choice. The "MOMS" in Jacksonville have helped each other and become friends with other "MOMS" around the state and country. When one of us feels that desperate moment and has a hard time functioning, the rest of us, hold her up. If you'd like to help, please click on our donate page: http://www.momsforsight.org/donate-directly.html