When our son Charley was first diagnosed with Duchenne muscular dystrophy (DMD) [a fatal deteriorating muscle disease], the immediate gut reaction was "Let's get him the best medical care we can possibly get. Let's pull every string, do all the research, find out where the best doctors are." When we came to our senses a little bit, we realized that it doesn't matter what doctor you see—there is no effective treatment or cure for this disease. So our next thought was, Why not? Is there something in the works?
We talked to experts in the field, did a lot of research, and found out that scientists were on the brink of starting human clinical trials. It was this crazy, intense timing. You see, the disease isn't that variable. Kids start to slow down by 7 or 8, by 10 to 12 they're in wheelchairs, and they experience respiratory failure at late teens or early 20s.
When Charley was diagnosed, we were in the honeymoon phase of the disease—the signs were so mild, we thought we were just dealing with slight developmental delay. To go from that to DMD was just devastating. Then, when we realized that the research was on the verge of breakthroughs on several fronts, we thought, Wow, we could really do this—we need to do this. We moved our energies from just taking care of Charley to also making sure we got the money for the research.
When we looked around at the different organizations, we felt there was a niche that needed to be filled. There was no singularly focused organization in our region raising money only for research. One of our friends gave us a pro bono account at a law firm and helped us set up the organization. And we just started calling people. You lose a lot of shyness and inhibition when you're in this position. My husband is a physician, and he called up the guy who discovered the cause of this disease 20 years ago. He learned about the research while I was raising the money. We always said about other couples, "Can you believe that they work together?" And now we do.
Getting Started
Fifteen years ago, my family opened a savings account together\—we were constantly buying each other gifts we didn't need, and the idea was that every year we would donate some of the money to a charity we agreed on. But we could never decide what to give it to—cancer, underprivileged kids...we couldn't make up our minds. So by the time we had incorporated Charley's Fund in 2004, there was $30,000 in the account. My family said, "We don't even need to have a discussion. Let's just dump the money in."
In 2005 we wrote a letter to 300 people. We listed everyone we knew—friends, colleagues, people we worked with. I'm a teacher and have worked in a couple of schools, so I reached out to the families. We received donations ranging from $10 to $10,000.
The Search for a Cure
DMD is the most common form of muscular dystrophy—in the U.S. alone, 15,000 to 20,000 kids have DMD. But until three years ago there was never a therapy that seemed worth a clinical trial. Now there are three clinical trials going on. I'm confident my grandchildren won't have to suffer from this. But I want to make it happen in time for Charley and other kids who have it now.
If there weren't a real chance of finding a cure for this during Charley's life, we wouldn't do this. I gave up my job as a teacher, my husband works so hard on this—everyone has sacrificed. If we really thought there weren't a chance that this would make a difference, we would make another choice—go traveling, take Charley to experience everything, work hard to be with him as much as possible.
A Family Effort
I do worry about the strain this puts on my family and my other children. My daughter Maisy is 3; she's oblivious and happy. I was pregnant with her when Charley was diagnosed, and she's brought so much joy into our lives, especially to Charley. He can help out with her, and if there's something he can't do with his older brother, there's someone else who can't, too.
I worry about what might happen to Maisy if she loses Charley. And it's even harder for Sammy because he's only 16 months older than Charley. Charley swallows 25 pills a day, and I let him chase that with a swig of Coke. Sammy is so young, and he says, "It's not fair, why does he get the Coke?" Last year was rough; Sammy did a lot of acting out in school. But if we let ourselves say, "What would our life be like if we didn't have this?" we'd be dead in the water. We think, This is our life. This is what can we do with this here, now.
