Saturday, June 20, 2015

How Can I Not?

Last night I sat at the Awards Dinner for the United Mitochondrial Disease Foundation. A woman, a mom was being honored for her work with the UMDF. A couple years ago, her son was diagnosed with Leigh's Disease, a horrible mitochondrial disease usually found in infancy. 

Doctors diagnosed her son at age 18. He is one of the oldest patients to be diagnosed with Leigh's- yet another heartbreaking story we hear at the Mitochondrial Conference. She got up and said that people sometimes ask her how she can find the time to be so dedicated to this cause. Her answer was, 

How could she not?

How could she not be so dedicated to a Foundation that is fighting for a cause that is so complex and so devastating? 

And how could she not be involved when the work being done impacts her son? 

This resonates with me, as it always does at the Mito Conference. People thank me for still being involved even after we have lost Samantha and I think, well of course!

Selfishly, it's one of the only times I get to talk unabashedly about my Sweet Little Miss. And I can use words like seizures, feeding tubes and ketogenic without getting a sympathetic or confused look. And honestly......How can I not?  How can I not? How can I not? 

Today I sat waiting for my plane home. I watched the current update regarding the tragedy in South Carolina. 

The irony, we fought so hard this week for the lives of our most fragile, our medically complex. We fought as a community, took our cause to Washington, we talked, we cried and we laughed. And I tired to soak in as much knowledge from our amazing, committed, doctors- doctors using their amazing intelligence to make lives better. 

People doing such good. 

While the headlines remind us that their are people doing such bad. And social media now reminds us that as these tragedies arise, we can be divided. 

I watched the news and thought, we are not this. 

We are still people doing good, people finding cures, people communing, providing comfort and hope. 

And so how can I not? How can I not? How can I not? 




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