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.
What a heart warming share, Rebecca. May you continue to grow & glow with these medical miracles worked on to help so many. I had not heard of your disease. I have Crohn's. Blessings to you, Rebecca.
Have a beautiful week ~
TTFN ~
Marydon
Posted by: Marydon | January 30, 2012 at 07:35 PM
You know I will walk with you wherever you go.
The heart knows all the roads without ever needing a map.
Posted by: Allegra | January 30, 2012 at 07:57 PM
Walking with you.
Holding your heart.
Posted by: deb taylor | January 30, 2012 at 08:06 PM
yes,
I too
am walking with you
gorgeous heart...
xox - eb.
Posted by: eb | January 30, 2012 at 09:27 PM
Thank you for sharing your story. Thank you for calling attention to this important topic. I know what you mean about an "orphan disease" - Katie's was very rare indeed. But there are no orphans in God's heart - we are all His and we are all related. God bless you and your heart, your work, your advocacy on behalf of others. And God bless those researchers and scientists who care!
Posted by: Karen Gerstenberger | January 30, 2012 at 10:17 PM
P.S. - I posted a link to your blog - I hope it brings support!
Posted by: Karen Gerstenberger | January 30, 2012 at 10:42 PM
You have my total support.
Peace
Posted by: Spadoman | January 31, 2012 at 02:40 AM
You give many hearts such hope. I beleive that blessings like this are a gift ofhope. Thank you for sharing.I walk with you.....
Posted by: Paintdiva | January 31, 2012 at 08:39 AM
you offer hope to so many, rebecca. your walk is one of courage, strength, and inspiration. sending love
Posted by: sperlygirl | January 31, 2012 at 08:49 AM
you know your words encourage me to hope, and keep on searching...
Posted by: leslie | January 31, 2012 at 11:18 AM
Okay. I'm going to say something mean. I'll get it off my chest and then come back when I'm done being mad at the doctor.
I hope you went back later and SLAPPED him. There. Off my chest. Now I'll cool off.
Love you.
Posted by: Annie | January 31, 2012 at 11:38 AM
I'm so glad you listened to your intuition, not the doctor (wtf?!) AND NEVER GAVE UP HOPE! I gladly donated to your cause. You will undoubtedly reach your goal. The world is a much more beautiful place because you are here. Thank God! I will gladly post a link to your blog as well. Much love to you and your team!
Posted by: Melissa | January 31, 2012 at 01:12 PM
I'm glad you resisted the doc's bleak outlook. I assume you have received Genzyme; perhaps that is what you are recuperating from now. I visited the site you mentioned, but it wouldn't take any user name that I proposed. Perhaps I just need to go to the site and find your name and then donate. I do support a local ALS non-profit as a family friend is 10 years living with it so far. I gather that Pompe is a form of MD. I did not know that. I am you are feeling much better today.
Posted by: Fran aka Redondowriter | January 31, 2012 at 05:10 PM
Celebrating your courage and your strength. Sending love and support.
Deb
Posted by: Mosaic Magpie | January 31, 2012 at 05:58 PM
You are rare, a unique multifaceted gem actually... there is none other like you on this earth, actually in this entire universe... we know you as our Rebecca of the heart, who threads our connections through all that you are passionate about, through every breath of hope that pulsates from your being... through the darkest times I have ever known, you appeared, a vibrant flame in the night of my soul... you were one of the angels to hold the door open, so I could return and stay here for awhile longer... and walk with you, through this twisting, amazing path of life...
Posted by: Lea | January 31, 2012 at 11:36 PM
It fills my heart that you DID NOT take this Dr's words to heart....you kept the hope and the outcome shows your tenacity for life!!!
Going to check out your link.
So happy Karen shared your story with me today; you are inspiring!
Posted by: Busy Bee Suz | February 01, 2012 at 07:37 AM
Oh Rebecca...this is so beautifully written. So many strange, painful, disabling diseases. My family seems to have our share, that is for sure. I will add a link back to your post from mine.
Posted by: Laura Hegfield | February 01, 2012 at 09:12 AM
PS....please stop by my blog I have something there for you.
Posted by: Laura Hegfield | February 01, 2012 at 09:20 AM
I will be walking right along side you my dear...
x..x
Posted by: Stephanie | February 01, 2012 at 04:29 PM
oh
oh
at first i thought
that was your heart
you were holding
up
there
in the photo
BUT
then i realized
it could not B
as you Own Heart
is
Truly Enormous...
{{ U never
walk alone, missy }}
♥
Posted by: somepinkflowers | February 02, 2012 at 06:38 AM