We love introducing you to some of our favorite BlogFrog users. Lately, we’ve been highlighting some of our Community Leaders, early BlogFrog adopters who help us make sure we are building blogging tools that reflect what bloggers really want and need.
I’m always amazed at the lives of some bloggers. Not only do they find time to blog, but the heroics and compassion happening behind the scenes in their daily lives just blows me away. Take Lucy and Ethel, bloggers “extraordinaire” who write to help spread awareness of spinal muscular atrophy, or SMA through their blog, The Suite Life of Lucy and Ethel. Here is their story in their own words:
If you’ve been hanging around the Suite for a while, you know that Lucy and Ethel met because of spinal muscular atrophy (SMA), a progressively wicked disease targeting the muscles used for head control, sitting, crawling, walking, sucking, swallowing, and breathing. Lucy and her husband, Ricky, er, Randy, faced SMA in its most destructive form when their third baby, Jeffrey, was diagnosed in July, 1997, with Type 1. The following month, Ethel posted on an SMA board that she and her husband, Fred, er, Glenn, were eager to set up a North Carolina chapter of Families of SMA on behalf of their son, Kevin, who has Type 2, a milder form.
Angel Intervention was in gear that night, too, as Lucy was the first to respond to Ethel’s inquiry for any interest in helping with the chapter. And that was all it took for them to realize there was a serious connection there. Well, a little serious and a lot good-for-the-soul connection. And it’s lasted over 12 years, a span that has witnessed death (Jeffrey and Lucy’s dad), a book (Lucy wrote the book, Ethel wrote the foreword), college football/graduation/grad school (Lucy’s son, Matthew), pending college graduation (Ethel’s Erin and Lucy’s Katie), far-away college (Ethel’s Brian), Erin’s engagement, and most recently – yesterday! – Kevin’s 16th birthday.
And much more.
Neither of them had internet sense until SMA was hurled their way; neither had seen a blog, either, until they decided they had way too much expertise not to share with the world. While they’re still figuring out in what areas that expertise may be, they know where it’s not. Technology. And still they forged ahead.
What we do have is a joint desire to help spread awareness about SMA. We can share what it’s like to lose a child and to live with a milder (though still wicked) form of the life-threatening disease. The one that is genetic. The one that leads the pack in genetic killers of children under two. The one in which 1 in 40 are carriers.
We also love sharing others’ blogs, particularly when special assignments are involved. We love to laugh and hope that there is a smile or two with most of our posts, anyway.
Lucy and Ethel
Read more about Lucy and Ethel at The Suite Life of Lucy and Ethel. They are sure to make sure smile!
{ 2 comments… read them below or add one }
We had a daughter that had signs of SMA when she was in the womb. She only lived for 26 hours. The only way we found out that she didn’t have it was that I was tested negative for it. We are not sure what she had but thinking that it was SMA I know a little bit about it. Then shortly have we had her, my sister-in-laws friend’s daughter passed away from it. I do hope they can find more about it.
Great feature!