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• 6 yr. old son with cxlr
• Posted: 2010-10-20 22:35:55 By Jen C
• Hello, my name is jenny and I am trying to get involved with other parents whose child has been affected by cxlr. My son is 6 yrs. old and we first noticed something was wrong at 6 months old. His eyes started moving around crazy. Nystagmus.. We then started going to drs. We started at Vanderbilt Children's Hospital then they sent us to William Beaumont in Royal Oak Michigan for surgery to tack down the good part of his retinas that were left. The surgeries were a success. He even got a little center vision back in both eyes. Since then we follow up at Vanderbilt with a wonderful dr. Dr. Franco Recchia. He has taken such good care of Dylan. Dylan has 20/200 in left and 5/200 in right.He does very well in school. Straight a's. He has really adapted well for his sight to be so bad. We have an IEP and he has wonderful teachers who make sure he is reaching his full potential. I have been very curious about all the research. The stem cell and the adenovirus research. Does anyone know more about these studies. I have a fear of him going completely blind but I know God will be with us. Dylan has such a wonderful personality he doesn't let anything get him down. He plays his DSI and is very good at it. He is a true joy in my life. I'm still waiting on DNA results telling me if I am the carrier. There is noone else in my family with this disease so this was a slap in the face. I would really just like to talk or chat with other parents with the same problem as Dylan's. My email is jenny.cansler@hotmail.com Thank you, Jenny

• Hello from another parent
• Posted: 2011-06-17 00:05:35 By Svitlana R
• Hello Jenny
  My baby was recently diagnosed with XLRS
  He is 7 month old
  It is impossible to find out now how he sees
  That is what the most upsetting thing
  doctor prescribed us a Trusopt drops,we didn't start using them yet
  How is your little boy doing?
  did they finally found out if you are a carrier?