Sunday, September 12, 2010

So much happening

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'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!


Vivian M said...

G-d and China knew what they were doing when they placed that little girl into your hands and hearts.

I commend your attitude, and I think you are doing the right thing. I think the sooner you talk to a therapist or a child psychologist the better.

And because the information about Katie is out there, I fear someone could slip, even if not intentionally. People I did not even know would come up to Kerri and I because of our blog.

Wish we could walk with you...we will be with you all in spirit!

Mary McG in TN said...

If Katie is in public school they are required by Federal Law to provide Katie with the resources that she needs. No ifs ands or buts - it's the law. Do not take any beating around the bush or all those words they will use on you to say"No" without saying the actual word. The law says that they have 20 days to test and discuss her needs. They are required to provide large print books for her which come from the State Dept. of Education. Just as you are doing now, dig in your heels and hang on!!!

May God Bless you in your time of trial.

Anonymous said...

My heart goes out to all of you! I can't imagine how difficult this is for all of you, but WOW I am so impressed with your tenacity to look forward and fight this thing! I have followed your family journey (blog) since the early adoption days (We shared the same log in date with you, and were in the first bunch to travel after the Referrals were lost). Know that you are all in my thoughts and prayers! What an amazing supprt group Katie has, and will have - and what a terrific team you all are!
Allison Rhodes
we also have a blog:

Heather BT said...

I have adopted two blind children from China. One boy who was born totally blind, 5 1/2, and one who has just a handspan of poor peripheral vision out her left eye, 10,. Her condition is similar but worse than Katie's is right now.
I would be happy to help in any way I can, sometimes it's good to vent, or to have a BTDT parent to talk to.
Being blind is a horrible thing for most people to contemplate, but as you meet more and more blind adults you'll find that life can be good, very good even, without sight.
There is not much that my children don't do, they ride bikes, they play instruments, they do chores. The difference between them, and the blind people who just sit at home and collect SDI is expectations on the part of the parents. It's very important that you continue to have the same expectations for her with no sight as you do for her with sight. No letting it slide. It's sometimes hard to figure out how to teach things so they'll understand, to figure out why you scramble an egg a certain way for example, but you still need to teach it so she can be self sufficient and live in her own place someday. We know a girl, who at 9, still doesn't put on her own shoes, please don't let that be your daughter.
Learning about OM, and Braille, and the whole new world of the parents of a VI child can be daunting, but you're off to a great start.
My blog needs a huge update but it's at
you can email me at heatherbt at mac dot com

Mom to brown eyed kids said...

I have RP, an RD disease. Dr. Kaushal, at UMASS, is receiving a 2 million dollar grant from the FFB to research a drug to treat RP. He also treats various other RD diseases at UMass using Depakote (valproic acid) off label. Might be worth a phone call.