Genetic testing, part 1

Charlotte has been invited to Moorfields to have genetic testing to determine whether or not she has the mutation that would enable her to be a candidate for a possible clinical trial. I'm delighted about the testing, we were going to have it done privately and this is perfect since they have come to us (and we can have it done at no cost!). The rest throws me into a world of mental turmoil. I would love nothing more than for Charlotte to be "cured". But what about the risks? I would have a really, really hard time saying no to a clinical trial, I believe they will be successful, quickly, and Charlotte is so young that she would be likely to have full vision restored with possibly no memory of ever having less than perfect vision. But what about the risks? Even if trials are successful, every treatment will carry risks just in the administration of the treatment. Can we risk permanent damage to even one eye? What if she is an achromat in one eye and totally sightless in the other? Or with noticeable eye deformities? She is just darling exactly the way she is - this afternoon, she was running around in the garden with her big sister, looking for fairies. I know I am getting way ahead of myself here but these are the thoughts that are going round and round in my head. It is so hard knowing that we have to make these decisions for her - by the time she is old enough to make them for herself, the benefits will have decreased significantly. What would you have had your parents do when you were a tiny child?