I’ve not been able to stop crying for two hours, but it is tears of joy. I’ve waited so many years to see this news. 23 years I’ve waited. I cannot begin to describe what this means to the Huntington’s community.
One day I’ll write about what it’s like to grow up knowing you might have a terminal, incurable illness, and not be allowed to test yourself because “it’s such a serious decision” they don’t want it hanging over you until you’re an adult (as if it doesn’t hang over you as you witness a parent die, and know you’ve got 50% chance of inheriting the same illness–as do your siblings). One day, I will talk about how, in the fear of traumatising children with the knowledge they might be incurably, terminally ill, they also took away their right to decide over their bodies to a degree that is traumatising. One day.
But today I am going to cry. Because it’s over. Because no child will ever have to go through the same uncertainty, because at least they will know there is a treatment option available. A treatment option that one of my siblings might come to rely on. With all the shit things happening around us, my childhood hope and dream have been realised. That’s got to count for something.