Betty Vertin is a 36-year-old mom living in Hastings, Nebraska with her husband, Jason and their six children: Lexi, Max, Chance, Rowen, Charlie and Mary. Despite the fact that three of her six children have been diagnosed with Duchenne muscular dystrophy (DMD), a rare and devastating degenerative disease, she has spent the last six years making every effort to help her family live and enjoy live to the fullest. She has made these efforts in the face of severe challenges in the health of her three sons affected by DMD. In addition to caring for her family, she also works to educate people about DMD and raise money for research to find a cure, which has become an important focus based on promising research that is now working to advance potential therapies toward approval. You can learn more through her Facebook page: facebook.com/MaxRowenCharlie.
Following are perspectives from Betty on her experience and her family:
I have three sweet boys with a rare genetic disease called Duchenne muscular dystrophy (DMD), a progressive condition that causes gradual muscle loss and weakness and eventually robs people of the ability to walk, often from as early as 10 years of age. DMD primarily affects boys and can lead to life-threatening lung and heart complications in their late teens and early twenties. There is no cure, and there are currently no approved therapies to treat DMD. However, researchers are working to advance an investigative treatment that is currently available only in clinical trials in the U.S. It has been shown to help delay progression of the disease, and is giving our family and many other families hope that help might be available someday soon.
My family's journey with DMD began in 2010 when my oldest son, Max was diagnosed at four years old. He was in preschool at the time and he wasn't meeting many of his developmental milestones. At first we thought he was missing milestones because he was a big baby, but during a parent teacher conference his teacher suggested that we check with a doctor.
Our family doctor enrolled Max in a physical therapy program, and it quickly became apparent that his developmental challenges were due to muscle weakness and not just slower-than-normal development. The physical therapist suggested that we get a blood test for Max to confirm whether he might have a type of muscular dystrophy (MD). At the time, I didn't know what MD was, so I asked our doctor to describe the symptoms. He mentioned that many boys with DMD have large calf muscles, trouble walking long distances or getting up off the floor, and many other symptoms that described Max perfectly. When I got a final confirmation that Max had DMD, it was the worst day of my life. No parent should hear words like: "your son will die." As awful as it was to hear that for the first time, our nightmare was only beginning. I learned that as a carrier of the disease, there was a 50 percent chance that my other sons would be affected.
