Monday, February 29, 2016

Rare Disease Day

A rare disease is defined statistically as one that effects less than 200,000 across the United States. Before I had Ayden Jane I had 3 healthy babies with all their chromosomes present and accounted for. I took that for granted. After Ayden Jane's birth and the 8 month search to discover the cause of her struggles I was introduced to the multitude of things that can happen... that do happen. There are so many...

When I say there are so many, I have read statistics that place the number of rare disorders at approximately 7000. Think about that. 7000 ways for things to develop differently. Back when Ayden Jane's genes revealed the source of her troubles, I would have said, "develop wrong, or improperly."

So why the change? Am I just being politically correct now that I am a bit sensitive to this whole genetic sydnrome, special needs, medically complicated, developmentally delayed club we were cast into? Okay, so maybe that's a part of it.

The larger part, however, is that along with being rare genetically, Ayden Jane is rare in many amazing ways. There is a strength and joy and determination and genuine caring that she possesses. There is a boldness of her spirit. She has an incredible ability to love and forgive. She sees the good in people no matter what they see (or don't see) in her. She has a depth to her that is genuine and rare.

I would take away the struggle is a second if I could. Why else would I fund raise to do just that! At the same time I am oddly thankful for the incredible little girl all those struggles have created.

Mostly, as I reflect on rare diseases today, I find I want to know the stories of the people who live with these syndromes. I am, admittedly, a science junkie and I find the science behind all of these fascinating. However, the strength within those who learn to do life differently is more than fascinating. Look for these kids/people. Slow down, take the time to get to know them and allow yourself to be blessed.

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