A few weeks ago I got a call from my dear friend Paige asking a favor. She explained about an installation that was being brought to the Capitol for one day only, mentioned a friend of hers, and I was ready to go. But I didn’t quite understand the magnitude of what was going on until I got there and shared this experience with her. She wrote up a beautiful summary of what this event was all about and the man whose life they were celebrating. I’ll let Paige’s story and the pictures speak for themselves:
“Robbie Squires died January 2, 2009. A son, a brother, a husband, a father, a friend. He was 40 years old; and people like Robbie Squires are not supposed to die young. But that’s what ALS does: it steals our loved ones – our sons, our brothers, our husbands, our fathers, our friends – piece by piece.
ALS (Amyotrophic lateral sclerosis), often referred to as “Lou Gehrig’s disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The cause of ALS is unknown, and there is no cure.
Robbie was one of the good guys. He genuinely loved and cared about others. He was kind, generous, compassionate, supportive and empathetic, and everyone he met was treated to his famous smile. A smile that always felt more like a hug, and immediately engaged friendship and made everyone feel at ease.
Robbie Squires is my friend, and I love him. His passing has tilted the universe onto a new axis, and life will never be the same.
During the spring of 2009 the ALS Association of Florida brought their amazing awareness campaign installation to the Florida Capitol. Robbie’s jersey stood among the mannequins in somber reminder of how much we know, and how much we don’t know: ALS is Stealing Our Loved Ones, Piece by Piece, and there is no cure. To learn more about ALS and what we can do to help, visit www.alsafl.org.
Thank you, Kylene, for your time and talent in creating a lasting memory of this poignant installation. You are not only an amazing photographer, you are a wonderful friend.”
Tomorrow I will be bringing you information on another cause that hit close to home for me. I hope everyone can find their own way to help.
Thank you so much for putting this blog entry up! My nana died last October from ALS and we were able to participate in the ALS walk in Jacksonville and they had these shirts set up. It’s definitely an amazing cause!
ALS is the worst. The more people talk about it, the closer we will come to finding a cure. Lovely photos, as always. 🙂
I think of Rob every day, his courage made me a better man. I love and miss my brother-in-law!!
I miss my Rob. :[
My best friend, Starr Bishop, who was only 21, passed away from ALS on March 14, 2009. This disease is horrible. Thank you for sharing this.
Here is the link to Starr’s story:
http://jacksonville.com/news/columnists/mark_woods/2009-03-18/story/her_impact_was_clear_in_the_end