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Spring 1998 Table of Contents
Versión Español de este artículo (Spanish Version)

Leber's Congenital Amarousis: Parents Seeking Parents

by Kit Looper, Canadian, TX

In the past two years, my daughter Bridget Stomberg, has "mothered" two beautiful little girls, healthy in every way except one. Kennedy (19 months), and Madison (about 8 months), were born without sight. Doctors diagnosed them as having Leber's Congenital Amaurosis (LCA). As far as we know now, the girls only have some light vision. No other handicaps have been noted so far.

I am a professional journalist, writer and researcher and have decided that "Grandma Kitty" should try to find out more about Kennedy and Madison's condition, not only for my own need to know, but possibly as a benefit to other families who may have children with this diagnosis. TSBVI has offered to help me establish a sort of "network" specific to LCA, for the purpose of sharing information, insights, inspirational experiences, and details on the latest in research in this field. So far, I have located two Texas LCA families, who have endorsed this idea wholeheartedly; one family has 2 young children with Leber's and the other has one grown daughter and teen sons (twins) with the condition.

We're all ready to communicate with others, if we can locate them, and I have some fascinating data on research going on across the country, that I'd like to share. For this reason, I particularly want to hear from professionals interested in, or currently working on, treatment, O&M, genetics research, or any other area of Leber's Congenital Amaurosis. ( I will certainly be glad to preserve professional confidences on specific details, and yet welcome general information to share with others.)

Remember, I'm new at this and still don't know very much yet, but if we can just get a Texas-based network going, I think we can all share our individual stories and learn together. For this reason, I am willing to be a contact person to help set up communications.

If you have questions, answers, ideas, or just plain interest, please get in touch with me, by email or that old standby, "snail mail." Be sure and let me know whether it is permissible to add your name to a contact or mailing list, in case I am able to start a newsletter. Please feel free to share your thoughts, feelings, and sources of information, so everyone can benefit. I'm even on the trail of LCA support groups in other states. If you know of any, please let me know. Contact: Kit Looper, 810 Summit, Canadian, TX 79014 (806) 323-8500 kit@lads.net.

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