When my daughter was born, they thought she had a genetic disorder that would lead to her eventual (horrible) death in childhood. It took over two years for all the testing and screening to be completed and during that time, I looked up every single dreadful neonatal disorder I could find, trying to discover symptoms that matched Ellie's. I never did and neither did the doctors.
What I did find, however, is that there are hundreds and hundreds (not exaggerating here) of unspeakable genetic things that can happen to a baby. Many of them have much worse symptoms than any of the dystrophies or dystonias (not exaggerating here either). They tend to run in families and are much more common in communities where inter-family marriages happen (eg. cousin marriages).
Then, I found out that one of the disorders that my Ellie *might* have was being treated by gene therapy. That means, they use chemotherapy to kill the child's immune system (same way they do with a bone marrow transplant) and then infuse 'good' genes in the hope that these will reproduce and overcrowd the 'bad' genes. (A 'bad' gene is one that has a tiny piece of chemical left out, or an extra piece tacked onto it). This has had amazing results and kids that should have become paralysed and suffocated by their own lungs are now surviving! Not only that, but they're surviving with full mental capacity!
Since then (about fifteen years ago), it's been discovered they can replace those faulty bits of gene by inserting them into the embryo *before* birth. That means the little baby is born healthy and need not go blind or lose the use of its limbs before a diagnosis (and gene therapy) can begin. If you look at a diagram of the DNA molecule, you'll see it has what they call 'base pairs' linked together to make its structure. What is being replaced is one or a few of those 'base pairs'. It's chemicals they're replacing, not traits from the father or mother. I suppose it's technically possible to 'design' a child with blonde hair and blue eyes - but I doubt any practitioner would or could do it because the cost and the risk are too great just for 'looks'. It's only used in the face of devastating illness.
I used to think I was very much opposed to these sci-fi-like techniques until my baby girl was born with the potential to die a horrible, painful death! Suddenly, I began to think it might be quite acceptable to replace that handful of chemicals and repair her faulty gene! LOL! Well, the good Lord didn't allow the worst to happen and my girl has grown up and is a lovely young woman. We never ever did find out what caused the symptoms she had at birth, but I have certainly changed a lot of the hard and fast opinions I used to hold.
Don't get me wrong: I'm not trying to change anyone else's opinions! I just thought I'd throw my own experience in for discussion as I think it's relevant to the original post. The most important lesson I've learned in all my days is that Life is a most miraculous thing and the birth of healthy children is what we all hope to see.
