Stargardts Disease

  Five years ago when my son was 11, we found out he had  Stargardts Macular Degeneration (SMD) and he is losing his central vision.


  I went through all the stages of grief, guilt, denial, bargaining, anger, acceptance.. etc. I think I had a harder time with it then my son did.


  He wasn't doing well in school when he was in a main stream school and now that he's in a blind school he's doing fantastic. He's in sports which he couldn't be in before and he's got a lot of friends instead of just one or two like before.


 Ever since we found out about it,  their father (my ex-husband) hasn't really had anything to do with either one of the boys. I am so angry and frustrated at him over this and it's hurt my son terribly. I think maybe he just doesn't know how to handle it. It must be nice to be able to bury your hand in the sand with something like this.


  That's all for now, sorry.. this is my first story and I haven't gotten the hang of this yet.

sassydontpm sassydontpm
31-35, F
3 Responses Jan 6, 2007

My daughter is going blind from this.

I'm so sorry to hear that. We were told for years that my son had SMD but after seeing different specialists, they no longer know exactly what is causing his blindness. It could also be RP or cone rod dystrophy; he has signs of all three. He will be 25 in a few months. He works full time, has a wife and two wonderful children and had adjusted well to his limitations.
I wish your daughter the best in life. It's so hard to see our children struggle, especially when it's with something that we ourselves haven't had to deal with.

I saw your note and then created one as well.. "my daughter is blind" Hope all is well!!! kim

What a strong person you must be to have two children doing so well that you have raised by yourself. <br />
How are your sons doing?