That was on a Friday and the next Monday we heard the first of RB from the ophthalmologists. My husbands sister happened to work there and because of our concern and impatients over the weekend she had made the appt. early. I can still remember the anesthetist comment on how she kept calling momma while having the EUA. ( she's still a fighter and strong willed today and no one can tell her she can't do something) She did have her right eye removed and has a prosthesis.  Sometimes we can't remember or tell which one it is. Her occularist does a great job. She is nearsided in the other eye and has to wear glasses and without them her vision is limited. This summer she took drivers ed and has her permit.( something she has looked forward to, independence!) We never treated her different.  She's done it all!  From age 3 to 9 she was in gymnastics competitions recieving trophies and medals, at age 10 she decided to give that up and play basketball.

Laura is a starter on the High School basketball team and thinks she looks cool in the goggles we insist she wear, after all the pro's use them. She's also been a cheerleader the last 4 years and amazes people with her back flips. She's even on the superintendents honor roll and was Valedictorian of her eighth grade class. She also likes to swim, sews, plays the piano and is an avid roller blader. We are very proud of her accomplishments and I don't mean to brag I just want everyone to know, let your RB child do what ever they feel comfortable doing within reason. (we are still telling her to wear sunglasses and goggles  and other protection ) I believe in letting them live and enjoy life, as I have read many of the other parents feel the same way.  Just wanted to let some of the parents of younger RB children know, because we didn't have anyone who could tell us there child's outcome through their growing up with the results of RB.

A question I have is to some of the RB patients who are older than Laura. She is at the age where she is preparing to attend college and wanting to take the ACT test. I have heard that you can take untimed tests or large print if you have vision problems. The problem is the school wants to say she is handicapped in some way.  I don't know how this might effect her later down the road.  We never used the word handicapped or told her that she was.  I also heard there is a 504 plan that is for kids with certain problems but I'm not sure what this includes either.  Does anyone know what the ramifications are of being labeled visually impaired?  Not to sound cruel or offend anyone, but sometimes being labeled a certain way can work against you or restrict you.  I feel she may need help in college especially if the class size is large and she cannot see the front of the room well.  If anyone could share their experiences with us we would greatly appreciate it.

I would also like to know about genetic counseling.  Laura needs to know how having RB will effect her life and decisions she will make in the future.  We are looking into this here and I only know one person in our state (Oklahoma ) with RB. I knew a couple of others, one my sons age, sadly died in a car wreck. The others, a twin, their parent  was transferred and a lady I met at a mall, we noticed each others children had a prosthesis and started to visit when a storm cut our visit short and were unable to exchange addresses. It is so easy to ramble on and I do apologize. If anyone has questions about our experience please feel free to write.  We too have lots of stories about her eye and the times she took it out!

Thanks again Mike for the information and fellowship. Your sons a cutie. My heart goes out to those who are just now beginning their journey.  Take care, and I pray that all will be well.

Debbie Luber

Yes it's OK to post and I would like to send you a picture of our daughter if you could tell me the best way.  No scanner here for a while.

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