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• Our 6-year old daughter just diagnosed
• Posted: 2013-05-13 10:33:38 By Corry P
• My beautiful 6-year old daughter was just diagnosed with Stargardt's disease. Obviously our family has been devastated. We are researching all of the treatment options (clinical trials) and trying to find the best doctors in the world. I thought I might be able to find some other parents on here that have gone through the same process. I am having a very hard time dealing with this. I need some practical advice re how to help my daughter and I need someone to tell me how to help my wife and me cope with this going forward.

• Posted: 2013-05-14 14:58:37 By Kerry O
• Hi Corry. I am no expert as I have just started researching the disease myself after my 28 year old boyfriend was diagnosed, but what I can tell you is don't lose hope. I have read wonderful stories of children with Stargardt's and their abilities. I have read about children playing in band, cheerleading, and being wonderful straight A students. Their ability to function normally with the disease is amazing and technological advances make working with computers and reading a reality for them. They might have to work a little harder becuase of their vision impairment, but they can do pretty much anything other kids can do. If you ever want to chat please email me at keroco26@yahoo.com. I have just been through the emotional part of this myself and am more than willing to be a sounding board or offer advice from my experiences. We are in the Midwest and Dr suggestions for us were the University of Illinois at Chicago (Dr Fishman) and University of Iowa (Dr Stone). We haven't gone to either one yet because my boyfriend's symptoms are very minimal (alomst none) at this time. We are opting to have it treated for the time being at our local retina specialist. From what I have heard from others who actually have the disease they say the most helpful part is finding a highly qualified low vision specialist to teach your daughter how to use the vision she has in the best way for her. Like I said please contact me if you need to chat. Hang in there. It gets easier.