Christopher, the youngest of our three children is a very loving and always happy little guy with a smile that lights up the world. Christopher is game for anything and, above all, wants to keep up with his older brother, Connor, and older sister, Gracie.
On November 6, 2008, we were broadsided with the news of Christopher’s diagnosis. It was earlier in that same day that we had taken him to see a rehabilitation doctor at Children’s Hospital in Denver. We had noticed that he had difficulty climbing the stairs, couldn’t quite jump and seemed to have low muscle tone. We had assumed he just needed a little physical therapy to strengthen his muscles. But after just one doctor’s appointment and one blood test, we received the devastating news that our seemingly perfectly healthy 2½-year-old boy had Duchenne muscular dystrophy, a fatal genetic disorder.
The doctors told us that Christopher was on a path leading to an early death and would probably lose the ability to walk by age 10 to 12, the use of his arms by his late teens, and would not likely survive his twenties. There is currently no cure. Duchenne affects approximately one in every 3,500 boys and is a progressive disease that slowly causes complete loss of muscle function. Although Duchenne is a genetic disorder, approximately 35% of cases occur because of a random spontaneous mutation. Duchenne can affect any family.
The fight against Duchenne has been severly underfunded. The future seemed bleak, and yet, as we did more research, we found something else: hope.Finding Hope
We learned that for the first time in the history of this disease, there were clinical trials underway for treatments with the potential to slow the progression of the disease. These treatments may change Duchenne into a disease that can be managed over a lifetime, much like diabetes is today. And there are many other research initiatives underway, all pursuing promising advances.
As we made more contacts and learned more about Duchenne, doctors and researchers in the field assured us that there will indeed be treatments and ultimately a cure for this disease. These experts said we truly can have hope for the future of our son. Yet they cautioned that research takes a long time, is extremely expensive and is often delayed due to lack of funding. No single treatment in development today is likely to stop the progression of the disease, so a combination of several drugs will be required. We also learned that we are close to potential treatments because of the efforts of parent-led organizations that have worked tirelessly to generate funding for research. We are in a race against time, as each day, with each step, Christopher’s muscles weaken. We need to act urgently.Foundation for a Future
In 2009 we incorporated Foundation for a Future. The sole purpose is to raise money to fund research that has the potential to bring treatments and, ideally, a cure for Duchenne to market in time to save this generation of boys.
Our goal is clear and our commitment is unwavering: we want to do everything we can to help give these boys a better future - and to send Duchenne into the past. With the help of many caring people, we can make it happen.