ZipperQ week is always exciting, but also hard for those of us who love Zip. See, we don’t talk about FOP every day…we can’t, because when we think of the reality of this disease and what it means for Zip’s life, we can’t even breathe. Sometimes I even forget….but when I’m reminded, it’s awful. Tonight was one of those times. I was at the football game, hanging with friends by the ZipperQ vehicles. Little kids were playing football on the lawn behind us. Zip wants to play so badly…but he knows. He can’t. Can’t get knocked down, can’t run because he might fall, can’t lift his arms to catch a pass because his shoulders are “locked.” He’s okay with it…he doesn’t complain. But, he just watches them and holds his football. When I see him…watching and maybe dreaming, then I remember…and I can’t breathe.
He needs a cure before he loses any more mobility. Right now his back, neck, shoulders, and one elbow are fused. Completely immobile…locked. That will never change. His wrists, hands, face, and lower body are still mobile, but his hips do ache sometimes.
Come to ZipperQ and eat some yummy BBQ, play some cornhole, listen to some jammin’ music, and help us fight for our sweet boy. October 7th, 3pm-7pm, Claremore Expo.
-by Natalie Pazzo-Jones