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• My Daughter with BBS
• Posted: 2009-06-14 23:20:11 By Christie K
• My 8 year old daughter was just diagnosed with Bardet-Biedl Syndrom (BBS). She has RP and is legally blind already. I am looking for a support group in the Detroit area and a group for kids with RP in the same area. I want her to get to know other kids with her condition. She is the only visually impaired child in her school and it is becoming painfully clear that her peers are less and less tolerant of her special nature. If anyone knows how I can contact these groups I'd really appreciate it. I know FFB probably has some ideas but the more options I can find the better.
  
  Thanks
  

• Posted: 2009-07-12 22:39:27 By
• Hi Christie,
  There is a yahoo group for aprents with children that have retinal degenration (RP and others). I am not sure if there are any in Detroit but this group can be of help to you as they ahve all ahd to deal with schools. Yes, your child may be the only one but through edcuation...others can learn to be tolerant.If you'd like to join send me an e-mail: mpostlewate@yahoo.com
  
  Marisa