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January 30, 2012


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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 ~


You know I will walk with you wherever you go.
The heart knows all the roads without ever needing a map.

deb taylor

Walking with you.
Holding your heart.


I too
am walking with you
gorgeous heart...

xox - eb.

Karen Gerstenberger

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!

Karen Gerstenberger

P.S. - I posted a link to your blog - I hope it brings support!


You have my total support.



You give many hearts such hope. I beleive that blessings like this are a gift ofhope. Thank you for sharing.I walk with you.....


you offer hope to so many, rebecca. your walk is one of courage, strength, and inspiration. sending love


you know your words encourage me to hope, and keep on searching...


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.


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!

Fran aka Redondowriter

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.

Mosaic Magpie

Celebrating your courage and your strength. Sending love and support.


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...

Busy Bee Suz

It fills my heart that you DID NOT take this Dr's words to 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!

Laura Hegfield

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.

Laura Hegfield

PS....please stop by my blog I have something there for you.


I will be walking right along side you my dear...


at first i thought
that was your heart
you were holding
in the photo
then i realized
it could not B
as you Own Heart
Truly Enormous...

{{ U never
walk alone, missy }}

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