Duchenne muscular dystrophy seen through the eyes of the families
There are over 7,000 rare diseases in Canada. Duchenne muscular dystrophy (DMD) is one of them. DMD afflicts children, especially young boys, and sometimes girls. This degenerative muscle disease causes loss of the ability to walk, heart and respiratory failure, and usually leads to premature death in the early twenties. Tecima Productions produced the “Living with DMD” documentary to tell the story of people living with DMD and their families at crucial moments in their journey: those of Dakota, age 6, Anakin, age 11, and Carl, age 35.
Anakin’s Loss of Autonomy
For other children, being 10 years old is a period for developing and gaining independence. For 10-year-old (in 2018) Anakin who has DMD, it’s a different experience, as he is progressively losing autonomy and is forced to seek help from his parents to get out of bed, in and out of the car, etc. It’s also during this exact stage that he becomes fully conscious of his destiny.
Bruce Babington, an excerpt from the documentary Living with DMD— “The last year has been tough for him. The disease has progressed quite significantly, and he’s losing the ability to use his legs. He cannot walk great distances, and he’s struggling to maintain the strength he has in his legs. You can see that it’s beginning to affect him both physically and mentally.”
A Race Against Time to Access New Treatments
Rare diseases such as DMD are fraught with all sorts of obstacles for families. There is very little funding for research, it is difficult to access new treatments, and long-term care for young adults is costly and often not available to families.
Marie-Catherine Du Berger excerpt from the documentary Living with DMD— “It’s a bit of a race against time because the faster you get the treatment, the better it is. But there are many obstacles in the drug approval process here, with repayments, financing, etc. By the way, it is done for us.”
Help Us Raise Awareness!
After reading this article or watching our documentary, you can certainly feel the urgency of sharing the story of these three families. We want to educate the public about the realities of people living with DMD, on behalf of those who have suffered, those who suffer now, and for future generations. Our aim for this project is to get better funding for research, to make new treatments more easily accessible, and so that long-term care becomes better available to young adults. We are doing this so that they have a chance for a better life.
How can you help us? Watch our documentary, continue reading our article, and share them with your communities. Every action counts.
Enjoy viewing our documentary and thank you for sharing it in your community
The “Living with DMD” documentary was produced by www.tecima.com
