To: Kim RE: (kansas) Pat and her COUSIN !!!

June 23, 2005

Hi Kim,

My cousin has had Stargardt's disease for several years.

Up until recently she had peripheral vision. Stargardt's is

like after someone has looked directly into the sun watching

an eclipse and when the eclipse was over the middle of your

eye had been so damaged that if you look straight ahead

you have a black spot in the middle your vision and can only see

around that black spot.

attends the School of the Blind in Raleigh, N.C. full time.

They get weekends off but it is a year round school. I live in Kansas

and as soon as I found out about 's disease I contacted

the National Institute for the blind and they were kind enough to

contact the family directly. attended regular school and

was furnished visual aids until 2 years ago when she was talked into

beginning school at the School for The Blind so she could be around

other children with the same problem. Unfortunately there is no cure

for the disease but the doctor's at the school told that the

disease had progressed as much as they thought it ever would and

that she would be able to retain her peripheral vision which enabled

her to see objects projected on a magnified screen. Now she is

losing that ability and she is distraught. She is 13 now and I am not

sure whether this new loss could have come at a worse time. 13

seems to be just when you are beginning to primp and become more

boy conscious and gain self-confidence now the more vision she loses

the more depressed she becomes. We are trying to find a Juvenile

retina specialist-North Carolina but are having a difficult time finding

a doctor other than the one she already had.

I am sure I didn't explain much of this when I first requested

prayer for her and I apologize. I guess I was anxious to get the

power of the prayers started and didn't want to bore anyone

with all of the particulars. I appreciate everyone's interest and

involvement and thank you so very much for your continued

prayers.

Do you live in Kansas? What part. I live in the greater Kansas City

area in a little town between K.C. and Lawrence, Ks. Are we close

enough for coffee? That would be nice.

Thanks Kim.

Hugs,

Pat (Ks)

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