You or your child has a (rare) disease, and you still don’t have the (correct) medical diagnosis. Finally, the medical diagnosis is given. And then…
What goes through your mind — or through the mind of a parent? What will my future look like, or that of our child and our family? What will I or our child be able or not able to do later in life?
What is the life expectancy for me or for our child? What impact will this have on our family? Will I or our child be able to live independently and build a future later on?
And the questions just keep coming.