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• My 10 yo son was just diagnosed with RP
• Posted: 2013-04-22 13:36:29 By Kim O
• Hi, My 10 year old son was just diagnosed with "rapidly progressing" RP. I'm desperately trying to connect with some other families with young children who are going through this. Despite knowing something has been wrong for over a year, and seeing many specialists, my son was just diagnosed and is already legally blind. He's a straight A student in school, and it is inconceivable to me how we could have missed this?! If you have gone through this, please reply. I'm so sad, and I'm trying to be strong for him because he is amazing! Thank you.

• Posted: 2013-05-03 18:56:33 By Timothy O
• Hi Kim
  
  I know it has been a little time since your orginal post, so hopefully you still get this.
  
  I just wanted to express my support for you and your son. I understand that things seem bleak at this moment and your saddness is justified... However, please remember that this is not a death sentence for your son. I was 4 or 5 when I was diagnosed with RP and probably legally blind by the time I was your son's age. Today, I am 36 years old, have a Ph.D. in Clinical Neuropsychology, a good career, and a relatively normal (and happy) life and family.
  
  Sure he may have some tough times ahead. I recall being 16 and seeing all my friends get a driver license as being a particularly tough time. Just support your son, believe in him. As you say, he is amazing, and there aren't many things that he can't do (sure bus driver may not be an option now) but I know he will be successful with your love and support. I know the unconditional love and support that I felt from my mom made a huge difference in my life.
  
  Let me know if there is anything else I can do to help you out.

• I know a ten year old boy just like him
• Posted: 2013-05-20 18:50:36 By Michael C
• Hi Kim,
  My grandson has the same condition as your son and remarkably enough, sounds alot like him. My grandson is just like any other boy who likes to be a normal person, just like anyone else. His arents feel just like you do and are concerned about the future and what is the best thing to do. They feel the blame falls on them just like I am sure you are feeling. But I know that he has the most loving and caring parents in the whole world who are going to do everything to make the rest of his life the best it can be, no matter what happens. With the love and support of your family, friends, belief and community, your son will be nothing short of fantastic, as I know he is now.
  Poppy M.