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Sunday, April 8, 2012

And the band played on....

Yesterday the EB community suffered another loss.  2 days shy of 8 months old, little Quinn lost her battle to junctional EB after undergoing a bone marrow transplant. 








last night after the Easter Bunny came, I still wasn't able to sleep and this is my Easter Eve ramblings I posted on Facebook:


Just my rambling thoughts on this Easter Eve......

Many years ago there was a movie that came out about the start of HIV and AIDS called And the Band Played On. When Tripp Roth passed away in January he had rallied so many people from around the world around him and around EB. And after he died, many of those people said they pictured him up in Heaven playing his drums; Heaven's little Drummer Boy. And it got me thinking...

I have been part of the on-line EB community for the past 13-14 years (WAY before I ever knew about Facebook) and have heard about a lot of babies being born with EB and I have also heard a lot of EB babies dying from EB. It's not something you will ever get use to hearing...but the reality is it's apart of life and it's apart of EB. I will always remember the first EB baby that was born and died after Sami with born, her name was Jordan. And the same goes for the ones who came and went around the time Garrett was born and died and around the time Joey were born too. So for the newest members of the EB community, I know the news of a new life claimed by EB is difficult to hear and it makes us sad and angry and all we want to do is turn off our computer screen and run and hide in our cozy beds with your kids pretending it doesn't exist but it DOES exist and I think that might be hardest part of all to accept. But we need to keep marching forward, toward a cure; The stories of Quinn, Chloe, Tripp, Seth, EJ, Bella, Elle, Nate, and all the other EB Angels, I wish I had the space to list them all, but their stories lead thousands of people to learn about EB and join our cause; And now even those great leader have gone on to better place, we are their band, And the band will play on....

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