New Documentary Follows Family After Sons' Muscular Dystrophy Diagnosis
What happened: A rare form of muscular dystrophy is chronicled in a new documentary where director and father Nick Taussig navigates the family’s life after his two sons are diagnosed with the condition. The boys, Theo and Oskar, have Duchenne muscular dystrophy. The film, “A Space in Time,” follows the boys as their condition progresses and reduces their mobility. The documentary includes perspective from the parents as well as a first-person account from the boys on adjusting to life with a disability.
Disability is often poorly portrayed or misrepresented, its depiction seeking to elicit sympathy, a sense of tragedy, or worse still, pity, which helps neither someone living with disability nor someone living without it. Why are the able-bodied so often unable to see beyond the disability … and witness instead an individual who leads a rich and varied life, their disability just one aspect of them? — Nick Taussig
'A Space in Time' is the first project made with Anima and was produced by Salon Pictures.
This feature length documentary will be distributed by Bohemia Media in February 2021.
A poster and more info below. Trailer coming soon! pic.twitter.com/SBfJqBgeGn
— Anima (@we_are_anima) October 8, 2020
The Frontlines: Duchenne muscular dystrophy is a genetic condition that causes muscles to atrophy over time. It’s a progressive disease and eventually leads to death. Symptoms usually present for the first time between ages 1 and 6 and symptoms typically include muscle weakness and missed developmental milestones.
- The condition is most common among boys. That’s because the condition is carried in the X chromosome, so women are typically only carriers.
- Duchenne muscular dystrophy is caused by a genetic mutation that keeps the body from producing the protein dystrophin. This protein is crucial in the proper functioning of muscles.
- The average age of diagnosis is about 4 years old. There is currently no cure.
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A Mighty Voice: Our contributor Michael Schiavo, who has Duchenne muscular dystrophy, shared what having a progressive disease has taught him about grief. “In time, I learned how to grieve and let go. The most important thing I learned about grieving is that you have to go through it. There is no way around it and no shortcuts to take. You must feel the pain and sorrow and express it in the company of those who love you. In the face of loss, no one can move on in an instant.” You can submit your first-person story, too.
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Other things to know: Duchenne muscular dystrophy occurs in about 1 in 3,500 male births. But the impacts of the disease are felt not only by those who go through it, but the families who love those with the diagnosis. Here is what Mighty contributors are saying about the condition:
- When My Son Shared How He Feels at Recess, It Brought Me to Tears
- To the Parents Who Just Stepped Into the Unknown of Their Child’s Illness
- Why I’m Fighting for Access to Treatment as a 22-Year-Old With Duchenne
How to take action: You can learn more about the documentary set to release in 2021 here and learn more about the condition and awareness efforts by visiting Duchenne.com.
Header image via Twitter
Silvia Pittman is a wife and new mom who is obsessed with all things digital. When she's not chasing after her toddler, she's writing and taking in the Gulf of Mexico views at the beach. She is a first generation immigrant committed to spreading awareness for issues that impact the Latinx community. She is always eager to tell new stories and believes in the unparalleled value of access to information.
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