Wednesday, February 1, 2012

Kalydeco is here.....

So, we all heard the news yesterday.....

The CF community is celebrating together, as one. We are one step closer to making each of our dreams for a cure, a reality.

I cried. I cried hard. I cried for those who we have already lost, for those who this break through comes too late. I cried for myself, for Natalie, because its not yet our time. I cried for the tiny G155ders who will know a long, healthy life, for the older G155ders who will have their lives changed....and for their mothers, who can breathe a tiny sigh of relief, even if it is just a tiny one.

Sitting in the car line waiting to pick up one of the kids, with Natalie in the back seat, scrolling through my Facebook on my iPhone because of the endless wait, I was bombarded by links about the news. I called Natalie's dad, he couldn't even understand what I was saying. I was a blubbering mess. Natalie was oblivious....her mind occupied with her Lalaloopsy dolls.....but I just kept looking back at tiny, so frail, so pale, with her dark circles under her eyes......All I could think was, "One step closer, baby......We're one step closer."

So close that sometimes I think I could reach out and touch it.....but so very far.....

Natalie's cough is a reminder.

We aren't done.

We have so much more to do.

But today is more than just one drug for 4% of the CF population.....its confirmation that our work, our fundraising, our passion and our tears are not in's working....we are close......we just have to keep going.

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