
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.
i don't remember his face but his words
never fail to astound me...
"pompe, 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 effects so few."

i will spare you the long
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 accounts.
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.
through research, brilliant minds and the dedication of Genzyme,
Pompes disease became the FIRST muscular disease to
be 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.

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 persons innate longing for
wholeness and a chance at living healthy fulfilling lives.
i am walking to eradicate the words
" do not ever hope"
and i am asking you to
walk with me.
if you cannot physically join in
please consider offering your support by following this link...
http://musclewalkmda.org/phoenix2012
click on
"search for a participant"
and typing in
rebecca brooks
all monies raised are going to support life saving research.
perhaps you will consider posting a link on your blog and
helping spread the word.
there are a million ways to share hope.
we can all be a part of a brighter future.