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Friday, March 1, 2013

"Share so others will be aware"

That is the request that I made yesterday, on Rare Disease Day.

Yesterday morning, I posted this photo on our Blessed by Brenna Facebook page, asking fans "Will you please share, so that others will be aware? Care about Rare."

As of this morning, it had been shared by 1,300 other people, and according to Facebook analytics, had been viewed by more than ONE HUNDRED AND SEVENTEEN THOUSAND people.

My mind is officially boggled.

We were also given an amazing opportunity yesterday to spread our message on a whole new level when featured photos of Brenna, along with information about Harlequin and our family and quotes from me. We were blown away by the support that has come in from that exposure, and it is beyond words the appreciation I feel that the public is becoming so much more educated about this disease.

Up until a couple of days ago, I really had no idea how I even wanted to commemorate Rare Disease Day. Last year on this day, Brenna  had been home for one month. I had scrambled to put a video together for the Rare Disease Day project I participated in - a video that still makes me cry every time I watch it.

This year, I was asked by my online friend Christie, who is a major advocate for EB, to write about our story for her widely read blog (thank you to Christie for helping spread awareness for HI in addition to EB!), so I jumped at the opportunity to do that. But it wasn't until Wednesday night that I decided to create a sort of "poster" of Brenna and ask people to share it with their own friends on Facebook.

I had no idea the reach it would have, and I'm so so grateful to our community of online friends and supporters who have invested so much time reading about, praying for and sharing the story of our family. I could have never envisioned this a year ago - the extent that Brenna's story and Brenna's life is inspiring people, bringing such acceptance and understanding to the world and providing hope for other families in similar situations.


  1. What a beautiful video and a beautiful family!

  2. I love this video and still cry every time I see it what a beautiful family and a beautiful little girl
    - HannahB

  3. I just loves yours efforts ! you all are looking together very cute.I'm speechless completely trust me.


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