The Reality of Hunter Syndrome

Posted Friday March 25, 2011 by Melissa

Reality of Hunter Syndrome

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.

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2 Responses to “The Reality of Hunter Syndrome”

  1. Melissa, you are so strong. My prayers are with you. As a mother of 2 boys, I can only imagine what you and your family are going through.

  2. Thank you Elizabeth. We are actually just incredibly blessed. Case has brought much more love, enjoyment, and purpose to our lives than any level of stress or worry!