Bittersweet Birthdays of Rare Disease

Posted Thursday March 12, 2015 by Melissa

candle-flameFor most MPS families, and many of those in other rare diseases as well, birthdays are very bittersweet events. What is meant to be a celebration is simply a reminder that we grow closer to the end. An event that highlights the responses we no longer get from cake, candles, or presents.

The laughter recedes. The excitement disappears. The understanding evaporates.

While miraculously, that is not our current reality, I cannot escape it. I will never get over it. I refuse to move past it.

That IS the reality of most families facing Hunter Syndrome…. Rett Syndrome…. Batten Disease…. Niemann-Pick Type C….

I will never let their suffering exist as a footnote to our miracle.

In fact, their suffering is indeed evidence of the miracle, for therein lies the otherwise certain future for my son and many others.

That is no more evident than this year.

Today is Case’s 8th birthday. We are celebrating.

Last night he asked, “Who wants to marry me?”

He thinks of the future with excited anticipation, and for the most part, so do we.

But only a few states away, on this very same day, a friend and fellow MPS mom sits with dreaded anticipation that today will be the day she loses her son. His body is failing. His lungs are filling with fluid. It is a matter of time. Hours maybe.

He is 11.

So while I celebrate today for Case, I grieve at the same time. This life isn’t fair.

We will miss a child who gave his mother the same laughter, song, and mischief that Case gives us.

Logan, you are loved.

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