Sometimes reading about MPS is not enough. As a friend would say, sometimes it is little black words on a little white page. Without the living reality, it is often difficult to imagine what MPS generally, and Hunter Syndrome in particular (did you know that there are many types of MPS? Hunter Syndrome is MPS II) can do to a child.
It is clinical to say that MPS slowly builds up in the body and brain of a child and takes away their abilities, but how does that look in real life?
How do you believe that a child who once walked, talked, went to the bathroom, dressed himself slowly lost that ability? How can you know that that is what happens, what will happen to your own child, absent a miracle?
Because it does.
Because after Case was diagnosed, I searched for videos of MPS children. I wanted to know the hard truth of what could happen to my son. I wanted to know, so I could fight harder, love harder, and most of all, pray harder.
Because I see Case in a boy named Kariem. Because I see Case in the early videos of my friends’ boys who have now since passed.
The certainty that this is what happens to our MPS children is is how I know that we’ve been given a miracle by this clinical trial. Please continue to pray for Kariem and our other MPS children, for the families of those who have already lost their children.