Notes from the “Living with DMD” web-doc Tecima Productions team.
Our small production team travelled across Canada, meeting with families whose children have Duchenne muscular dystrophy (DMD). We met with Dakota (age 6), Anakin (age 11) and Carl (age 35) at critical moments in their journey. Our goal was to produce a web-doc in three acts, to raise awareness about DMD by living it through the eyes of the families suffering because of it. This degenerative muscle disease, for which there is no cure, usually leads to premature death in the patient’s early twenties. When we met the Albert family, we discovered a happy family, despite the suffering. But mom Kristen’s smiles and laughter—that resonate throughout the household hide a great sadness: knowing that the family’s middle son Dakota is afflicted with DMD.
A Painful Projection of the Future
Today, this ebullient early-thirties couple are the proud parents of (get this) a family of 5 children. When the diagnosis fell, Dakota was just three years old. Projecting such a tragic fate for a 3-year old (at the time) is beyond a broken heart. It’s also a scenario that follows you in all of your life’s activities.
— Kristen Albert—Excerpt from the documentary Living with DMD. “You know, you have this outlook on your family, thinking, you’ll have happy, healthy kids, and then, all of a sudden, we find out that our middle boy is going to die before he should. It’s hard to deal with that every day.”
A DMD Diagnosis… and autism
Unfortunately, in addition to DMD, Dakota has also been diagnosed with autism. This reality has brought the family to face another dilemma: whether or not to administer corticosteroids that can increase the symptoms of autism.
—Aaron Albert—Excerpt from the documentary Living with DMD. “I would like to stay away from steroids for as long as possible. Because my son has autism as well, he’s already having some developmental issues, behaviour-wise. He has to deal with anger and shows aggressive behaviour; steroids can make that worse. They can cause obesity, osteoporosis and behaviour issues. We’ve decided that we can’t really make that worse right now; he needs help with his autism first.”
Despite all this sadness and the dilemmas he faces, Dakota has one of the most beautiful smiles we’ve ever seen. Mom Kristen’s laughter lights up their home because, despite the suffering, they are happy people.
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The documentary “Living with DMD” is produced by www.tecima.com
* It should be noted that the Albert family’s story is a specific case, each DMD and autism diagnosis has its own unique characteristics and details. Taking corticosteroids or not in this situation is the personal decision of each parent. The Albert family has also had access to a corticosteroid-like treatment since the documentary was shot.
More about corticosteroïdes here.
