Last fall my friend Tammy hosted an amazing event aimed at gaining money for Duchenne Research.

She brought out Sarah Burgess, who you may recognize from American Idol, who is supremely talented.

Sarah’s little brother was diagnosed with Duchenne Muscular Dystrophy as well and she now makes it her life mission to bring awareness through her music and talents to try to find an end to Duchenne.

I had the pleasure of meeting Sarah for the first time this past summer in Chicago at the Parent Project Muscular Dystrophy Connect Conference.

She is so sweet and it was wonderful to again see her and watch her perform.

At the All in For Duchenne Event, Sarah sang a lovely song she wrote called “The Spoken Word”.

To say that I was sobbing during it would be quite the understatement.

For she so eloquently put into words,

just how I feel so very often.

This is the lyrics from her song and then her video is underneath that.

I encourage you to watch it and visit her website to keep up with her and see how she is changing the face of duchenne.

Here is some more information on her and her partnership with Cure Duchenne.

The Spoken Word by Sarah Burgess

Everytime I’m asked to speak at an event, I always shudder when I give my reply.

Of course it’s a yes, I want to help.  Whatever you need.

I’m not nervous. I’m just hoping to God that my knees don’t shake, and I don’t cry.

My little brother, Jacob, he has a condition called Duchenne Muscular Dystrophy.

It’s a devastating, horrible, ruthless disease that robs little boys from growing up and becoming men.

I’m 27, married, and I’d like to think I’ve experienced a whole heck of a lot.

I’ve pursued my dreams and traveled overseas.

Don’t google Duchenne.

But right away my mind told me to disagree.

I fired up my laptop and typed the letters D-U-C-H-E-N-N-E.

I read that my little brother is going to have limited days.

This disease affects one out of every 3500 boys.

And there’s no cure or medications to help his muscles stay.

At first I didn’t believe Jacob’s diagnosis.

I mean, they must’ve gotten it wrong.

With my world crashing in all around me, I knew for Jacob, that he needed his family to be strong.

I never thought something like Duchenne would show up in our lives.

Duchenne is violent tornado, ripping and destroying families, making it close to impossible to survive.

Being a big sister is never going to be an easy thing, but I know, whatever you do, you have to keep moving forward.

I refuse to live life governed by the things I cannot control, and instead live life doing the things that I can.

I trust and I believe in a God that knows exactly what he is doing, for he knows the ones that can change this outcome.

I’ve stopped questioning about how our lives will be centered around Duchenne, I’m reminded of the hope every single time I bow my head & listen to the words, Amen.

My brothers only gripe is when he loses at a level on a video game, yet he never complains when falling and failing to keep up with his friends, knowing that his muscles just don’t work the same.

Everytime Jacob giggles and laughs, or looks at me with those big, blue sparkling eyes, I choose to ignore the ones who don’t understand or have comments that are snide. People that whisper and say, “What about your life?”

Over a year ago, I made the decision to use my gifts and talents to help my brother and every other afflicted by Duchenne. It’s the toughest road I’ve ever taken, but it’s one that I would choose over and OVER  AND OVER AGAIN.

You may not understand the pain, or the little struggles a Duchenne family faces everyday.

 Just like a thief in the night, never expecting, without warning,  your life can completely change.

Life’s about cherishing the little moments.

Loving, celebrating, appreciating each day.

They know what causes Duchenne and they know how to fix it.

But the lack of funds has haulted a cure from coming into motion.

I will use every bit of my spoken emotion, do whatever I can to cause a commotion, convince you of my undying devotion, to have just one of you help cure Duchenne.

Will you help?

Together we WILL runaway.

Here’s the video of it: