In honor of World Duchenne Awareness Day today, September 7, the Beaulieu family shares both their pain and the inspiring way they are dealing with their two sons' fatal diagnoses in a new short film titled "Changing Lives with Every Breath: The Beaulieu Family."
As mom Michelle Beaulieu recounts in the film—which was created with ResMed, the company that developed the life-support ventilators her sons now rely upon—at first she had no idea her sons were sick. But her husband Steve admits they always knew something was not 100 percent right with their middle son Ross, who always seemed to be moving slower than other kids. Eventually, he was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder marked by progressive muscular weakness.
Michelle would learn that women carry the disease and pass it along to their sons. The family also learned that, unthinkably, their two other boys, Dawson and Finn, were at risk for the fatal disease.
Three weeks after Ross's diagnosis, the results of Finn's blood test came in, and he was also given a DMD diagnosis. Dawson does not have the disorder.
Ross is now 20 and Finn is 16. Their disease means their muscles—including their hearts—will continue to get weaker. As Steve explains in the film, most boys with DMD die of heart failure.
"There's no cure and no treatment," the heartbroken dad says. The boys do take steroids, which help, but the drugs also make the boys stop growing, gain weight, and have a "puffy" look. "The way my child looks is changing because of the medication, and I don't like that—that's not fair," Michelle says. "But you know, you just have to get over this stuff and not resent it."
It's beyond inspiring to hear the Beaulieus talk about how they came to accept their sons' diagnoses and learn to appreciate the equipment, like wheelchairs and respirators, that would soon become a part of their daily realities.
Still, DMD "stops you from thinking about all the things you can do," Michelle admits. But the Beaulieus weren't about to let DMD keep them from enjoying new adventures in life. Several years ago, the family took a trip to Egypt.
Travels to 18 more countries over 10 years would follow. And they have no plans to stop traveling and experiencing life together. Of course, taking two boys with DMD globetrotting does present its fair share of challenges.
"We enjoy the problem-solving aspect of traveling," Michelle says, adding, "We don't want barriers to stop us."
But it's impossible to escape the reality that, according to Michelle, DMD is the most common childhood lethal disease. "I still don't accept that they are going to die," she says through tears.
"I do think there is a gift in this," this amazing mom says at the end of the film. Michelle and Steve told Parents.com that by sharing their story in the film, they "hope to inspire other families of individuals living with disabilities, to love each other, be strong together, and make every day count. Do what you can and be as positive as you can be! There is only one chance at this and we need to make the most of it."
Their advice to other parents of kids with life-altering diagnoses, who may feel limited in what they can experience as a family, is to try and live life to the fullest, and not take anything for granted. "Don't wait for the perfect timing to fulfill your dreams as a family," the Beaulieus say. "There will never be a perfect time. We have always believed that there is no time like the present and that families with persons with disabilities can make great things happen in their lives."
To learn more about this inspiring family, visit: ResMed.com/ChangingLives.
Melissa Willets is a writer/blogger and a mom. Follow her on Twitter (@Spitupnsuburbs), where she chronicles her love of exercising and drinking coffee, but never simultaneously.