Mom of Three Boys with Muscular Dystrophy Shares Her Secrets on Remaining Positive
During the summer of 2010, Betty Vertin learned that her son, Max, had a rare muscular disorder known as Duchenne muscular dystrophy (DMD).
For Betty and her husband Jason, Max’s diagnosis would be just the beginning. In the next few years, she would learn that, aside from Max, two more of her son’s would also have DMD.
The mother usually carries the gene for DMD, and even though Betty does not have a history of the disease in her family, she is still a carrier. Being a carrier has had more than just affected the health of her three boys, she also suffers from a few health problems related to the disease. Doctors have found some scarring on her heart and she is required to take medication, which includes beta blockers.
Thankfully, nothing has resulted in serious complications, but Betty is well-aware of the decrease in her energy. She is also aware that her daughters might also be carriers of the disease and could potentially pass it down to their children.
Betty says that Duchenne is "all I've ever known."
As Betty puts it, “I don’t know what it’s not like to have three sons with Duchenne [...] It’s all I’ve ever known.” Aside from how physically demanding the disease can be for the parents, her and her husband also face a huge financial burden. For any family, having a child with DMD is not cheap. The condition often requires a lot of expensive medication and treatment plans, and the Vertins are no exception.
For the boys to lead normal lives, the Vertins try to provide as many options for them as they can, despite the cost.
All three of Betty’s sons have what-is-called a "nonsense mutation", which is a mutation in the sequence of someone's DNA. In their case, the gene responsible for the production of the protein needed for good muscular health is affected. Because of this mutation, the boys are currently participating in the third phase of a clinical trial for a drug called Translarna.
Although Translarna still needs to undergo further testing, the results of the trials have shown the effectiveness of this treatment for DMD. Thanks to their eligibility to participate in the trial, the family does not have to pay out of pocket for Translarna, which could cost tens of thousands of dollars per child annually.
Read on to see what Betty Vertin does to remain positive with her three boys.
Photo source: Muscular Dystrophy News/The Vertin Family