It seems like we have had Katie's diagnosis of Cone-Rod Dystrophy for months instead of 10 days. So much has happened and so many wonderful people have become a part of the Katie Starr Team. It is much more than money that is driving this train. It is the awareness of hereditary blindness and other conditions that require stem cell research to find a cure.
I feel quite driven to keep this message out there and like I have said to so many already.....until a cure is found, we will not rest.
On another note, we need to begin putting together a plan for our girl. The first thing that we need to do is to speak to a proffessional about the proper way to share this very troubling information with Katie. We think she is too young to begin this discussion other than explaining to her as we make changes to her glasses and possibly the learning of alternative ways of acquiring information such as learning Braille, that her eyes are weak and these are the things that we do if that is the case. We may be wrong but we do not think that she is ready to absorb all of this and unless a therapist or someone that has been through this tells us otherwise and what the correct way to handle this may be.....well, we will not be telling her anytime soon. We want to preserve her innocence and knowledge of such a challenge for as long as we can.
We will be meeting with her Pediatric Opthamologist soon to discuss the reports in greater detail and then we will discuss what the first steps will be. Once that is done we will form an educational framework for her. I pray that the school that she is in right now has the resources that may be needed for her. If they do not, then she will need to be moved to another school and that will just break my heart. I want for her to be in the same school as Ethan. They love being in the same school so much!
We have been so gratified and so humbled by the friendship and support that we have received from friends and family. I have been quite a pest with the links that I share but everyone has been more than wonderful to keep passing them along. Communication is truly power! Through all of the sharing of this information from friend to friend, I have been placed in touch with people that have the same condition, found out that the Foundation Fighting Blindness is headed by the friend of a friend who will be in touch with me this week, also been in touch with the regional director of the same organization, who was so impressed by my fund raising ferocity that she wants to meet with me this week to find out about how I am getting the word out and finally a synopsis of Katie Starr's story was placed on Blogher.com's homepage (here is the link).
I remember reading this quote once and it has always stuck with me:
“The bravest battle that ever was fought; Shall I tell you where and when? On the maps of the world you will find it not; It was fought by the mothers of men”
There is nothing that I would not do for my family. I am a mama that is waging a war on behalf of my daughter; the amazing Katie Starr! Please become part of my army!