Sunday, June 9, 2013

Hope for Ella, revisited

This is the most recent Facebook "poster" I made for the Hope for Ella FB page .

While all pictures and presentations that I've created so far for Hope for Ella have been inspired and fueled by my love for this little girl and her family, this one struck me to the core. Making it wasn't easy and I kept thinking maybe I shouldn't do it--here was this absolutely precious picture Mallory took of Ella, and I was taking it apart and adding the harsh realities of this genetic disorder all over this beautiful child. It dawned on me that a picture, for all of us, is simply a a glimpse into what Terri, Chris, Ella, and Claire deal with in real life every single day. This is the reality of Neurofibromatosis: it is in this adorable child, it is always active, always on the move, always lurking, always threatening...and can not be stopped. I can not fathom living with that kind of uncertainty for your child every single day, yet Terri and Chris do it with grace, humor, and generosity. The very least we can do is look at this picture and learn about this genetic disorder that affects 1 in 3000 people. With awareness we can keep research on the rise and hope and pray for a cure.

For more information, click on the link in the opening paragraph to visit Ella's Facebook page, or you can go to . Hope for Ella is also on twitter

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