Treatments and cures: not so black and white

Usually, one of the first things that anyone says to me, when I tell them about Charlotte, is to mention, or question, treatment, laser surgery, glasses, cure, research, medical miracles or some variation thereof. I did it too, treatment was the first thing I asked the Pedeatrician about; and I was shocked to hear that there is none.

Even though I did it myself, I find it irritating when this is the thing that people gravitate towards. I realise that this is my issue and they are just trying to be kind and take the pain away from me. What I really want is sympathy, not solutions. I am trying to find a stock answer that will work to make them understand our situation, while acknowledging their kind intentions. So far, all I have come up with is, "I wish there was something we could do."

I have also had suggestions that acupuncture, cranio-sacral osteopathy and eating carrots can make blind people see.

I do believe that genetic research will one day offer a cure for conditions such as Charlotte's. But I fear that it will come too late for her to benefit. This is because of my limited knowledge of how a baby and child's visual cortex develops in early life. If the development is altered, as hers will be, or non-existent, as in the completely blind, how will restoring the functioning of the eyes create normal sight? Sight requires the eyes and the brain working together. The brain is not born with the required neural connections in place, this develops through infancy and childhood.

I'm not saying that there is no point persuing various cures or that they are of no benefit. If anyone can avoid living through this, I am all for it. I am particularly hopeful that if this genetic condition is likely to be passed on to Charlotte or Emily's children, that they will benefit from treatment. Also, people who have lost their sight after having it, would jump at the chance to see again. They have had the required development in the visual cortex to benefit from regaining their sight.

If Charlotte were offered her sight as an adult, should she take the opportunity? Would it even be sight as we know it? That is a decision that she would have to make and, if we have done our job properly, she will be a confident, intelligent woman who is capable of making her own, complex, decisions. If she is a fully functioning, active member of society with a job, a social life, hobbies and interests, I really think she would be right to hesitate to queue up for a cure.

My mother would be horrified at my expression of these sentiments. It seems so black and white. To see or not: of course, everyone would choose to be able to see as well as possible. If there were a cure available today, or next year, of course we would do it. But in her distant future, who knows? It's a pretty grey area.