Adam Ferguson said on 2013/02/07 at 7:01 pm
Hi everyone. My wife and I discovered almost a year ago that our son has inherited the eye condition which I have. As far as being practically equipped for having a child who is VI I think we are pretty well set-up. I know, for instance, organisations who can help, practical everyday help which he can make use of and so on. the thing which I struggle with is the guilt I feel at sharing this with him. As a parent you obviously want the best for your child, to give them every advantage in life that you can. However because of me he has started with quite a big disadvantage. I was just wondering if anyone else is or has been in this position. Thanks.
Streaky58 said on 07/02/2013 at 7:01 pm
Hi. I am in a similar position: Our (15 year old) daughter has recently been diagnosed with Stargardt's Disease (a deteriorating genetic disease). This news came totally out of the blue, as although our daughter's sight appeared to have deteriorated over the last two years (having prevously not had problems with her sight) we had assumed the problem could be corrected with spectacles. Her diagnosis has left us feeling that the bottom has dropped out of our world and I agree wholeheartedly with your comments regarding guilt etc. We feel that we are at the beginning of a very difficult journey and our emotions are all over the place at the moment. As a parent, we are protective of our children, but now we feel we must "protect" her even more so. We fear for her future, and mourn for the future we feel she has "lost" due to us passing on our defective genes. I hope this helps, in knowing that you are not alone, and that there are many more parents out there in a similar position. Regards.