If there were a test that could help you ensure that your child was not born with a fatal genetic disease, would you take it? Of course you would. But what if that meant that a potentially amazing child — one who brings light to your life — would never be born? Would it still be worth it?
These are the questions that spring to mind when I hear that a new genetic test can help ensure that babies who might have a deadly genetic disease are never conceived. Certain fatal diseases like Tay Sachs disease and cystic fibrosis are genetically inherited, meaning that if both parents are carriers for the disease, they have a one in four chance of having a child who is affected. These diseases are widely known and as such, there are genetic tests in place that would-be parents can take to ensure that they don't pass on this disease to their children.
But there are hundreds of other, less common diseases, such as Batten and Fabry's that are just as deadly but for which no conception tests previously existed — until now.
This new genetic test was the brainchild of two parents, Craig and Charlotte Benson, whose daughter, Christiane, was diagnosed with Batten disease, a nerve disorder that causes seizures and blindness and carries a life expectancy of the late teens or early 20s. There is no cure.
The Bensons founded Beyond Batten
with the mission to raise awareness about the deadly disease and to develop a blood test to detect the gene mutations for it and hundreds of other rare conditions that claim the lives of thousands of children each year.
But wouldn't such a test mean that children like Christiane would never be born at all? I can't even begin to comprehend what life must be like for the Bensons ... what life would be like to know that you will outlive your child. But would it be worth not having that child in your life at all?
What do you think?