Rebecca Brooks: Walk with Me

Fourteen years ago, I sat in a small white office before an esteemed doctor who would finally end the long mystery of my failing body.

I expected a door to open. A name would be spoken and a path, no matter how arduous, would be offered. I did not expect a miracle, a bright ending. Yet I believed I would move forward. There would be chances for fulfillment, and hope would accompany me.

© 2012 Rebecca Brooks

I don’t remember his face, but his words never fail to astound me. “. . . Pompe Disease, a rare genetic metabolic disease. I recommend you go home, place your papers in order, do all the things you have ever dreamed of doing. Just do not ever hope for a treatment or even research.

“What you have is known as an orphan disease. There is no profit to be gained in understanding or treating a disease that affects so few.”

© 2012 Rebecca Brooks

I will spare you the long story. The arduous fight for life and the daily search for direction.

I will cut right to the chase and assure you the “good” doctor was completely wrong on all counts. Yes, I had Pompe Disease. But there was a wealth of comprehensive research, the possibility of an enzyme replacement therapy in the works, and Genzyme, a biotech company that believes people who suffer the unique challenges of a rare disease are worth their attention and investment.

From my date of diagnosis, it was nine long years until that ground-breaking enzyme replacement therapy was available.  I am, as is my extended “orphan disease family,” forever grateful that through research, brilliant minds, and the dedication of Genzyme, Pompe’s Disease became the first muscular disease to have been offered a treatment.

But one answer is not enough. There are countless others who need an open door, the hope of research and the reality of treatment.

© 2012 Rebecca Brooks

This year I am walking for hope.

I am embracing every parent who wonders what horizon waits for their suffering child. I am turning away from the isolating nature of “rare” and calling out for solidarity. I am walking to comfort all those waiting. I am walking in honor of believing in each person’s innate longing for wholeness and a chance at living healthy fulfilling lives.

I am walking to eradicate the words “do not ever hope.”

© 2012 Rebecca Brooks

And I am asking you to walk with me. If you cannot physically join in, please consider offering your support HERE. All monies raised are going solely to support life-saving research.

Perhaps you will consider reposting this on your blog and helping spread the word.

There are a million ways to share hope. We can all be part of a brighter future.

Thank you.

(© 2012 Rebecca Brooks. Used by permission.)