I signed up for a Google alert for “Duchenne Muscular Dystrophy” and I get links e-mailed to me every day with stories relating to the disease. These stories range from press releases from companies doing ground-breaking research (like AVI BioPharma) to community interest pieces about fund raising efforts or a local family that is dealing with the disease. Sometimes I get one that I feel that I have to share with on the blog. I posted a little while ago about the 2009 Climb to Cure Duchenne.
This most recent story from the Gainesville Sun (written by Lashonda Stinson Curry) relates to that post, but on a much more personal level. I’ll share some of the quotes from the story here, but please take the time to read the entire thing. The article is very well-written. It’s incredibly poignant, touching and heartbreaking. Once again, the quotes from the family convey the urgency with which we must approach funding research to find a therapy and a cure. Bill and Kimberly Procko’s son, Evan, was born with DMD and Bill is training to climb Mt. Rainier as part of the 2009 Climb to Cure Duchenne.
One quote by Bill Procko:
“Birthdays are bittersweet because we don’t want another birthday to come. We want it to slow down. We want time, we don’t want to see him get one year older until this thing is taken care of.”
“In a whole new twisted way you’re told to raise your child. He’s going to be a happy, wonderful little kid. He’s going to learn all these things and he’s going to think he’s fine, but in 15 years prepare, because he’s going to be killed by a car. Everything he is learning day by day he’s going to lose that ability — his legs, his arms, hands, every use of everything. So every proud little achievement he makes, it’s a twist in your gut.”
Evan’s mother, Kimberly Procko is quoted:
“Evan is moving all around now and having fun with his brother and you see this and you’re knowing that the progression that’s coming is so mind-bending. If you have a child and you know this child has a disability and that’s it, then you learn to work around it. But we can’t work around it because his disability has not fully been realized until he dies. It’s just going to keep getting worse and worse and worse.”
We can all do something to help fund research to find an effective therapy for this disease. Buy the Live Inspired application for the iPhone. Donate to Charley’s Fund. Donate to a climber in the 2009 Climb to Cure Duchenne. Every single dollar helps and collectively, we can make a difference for this generation of boys. The time is now. Please help.