Maddie’s story of self-acceptance has become the platform for her advocacy. She works as a Disability Media and Content specialist, runs a podcast, and uses social media to raise awareness in both the rare disease and disability networks. She has created a space that blends her passions for patient advocacy, disability justice, gender identity, and self-care into an open dialogue with the larger world.
The Tenacity of Hope is a documentary film made in collaboration between Living in the Light and CureCMD, showcasing members of the congenital muscular dystrophy community and their diverse journeys and perspectives. The film was originally created for CureCMD’s Patient-Focused Drug Development (PFDD) meeting with the FDA in 2022.
“I want to show young people, or anyone else, that heart disease is not the end of the road. It’s not the end of your life.” Bouba was born in Senegal, grew up in Mali, and then went on to study engineering in South Africa. It was there that he met Desirée, now his wife and mother to their three rambunctious sons. It was also in South Africa that Bouba was first diagnosed with dilated cardiomyopathy (DCM), a rare genetic condition that affects cardiac muscle tissue.
“To the Pompe community and my Pompe friends, I say, do not give up. Don't give in.”
“Life isn’t about how many years you live. Life is about what you do with the years you do get. I’m reminded by that, unfortunately, on a daily basis.”
As a disabled athlete and activist, Sean has found his voice and his mission as he continues to adapt to the increasing symptoms of FA, all while advocating for better treatments and someday, a cure.
“When I make decisions, I have to think about things differently. Am I going to get hurt or not?”
“Learning to live with what you’ve been bestowed is not always comfortable. I can’t even count the number of uncomfortable moments that I had to navigate over the years, regarding various issues–my gender identity, my race, and my blood disorder.”
Meditative and introspective, Mallory has spent ample time reflecting on the turns her life has taken. At the cusp of a new decade, entering her 30s, she has both reached and surpassed many milestones that, as a young person living with DMD, were not ever taken for granted. “Living with DMD puts you in front of your own mortality.”
Milton takes it one day at a time, counting his small victories when he can. This determination rises from his desire to get back to living. “I would love to take my grandson to a museum. I would love to drive a Mustang. I would love to just drive to places I love. Just live my life. That’s my desire.”
“I just want people to cure this disease. Many children suffer because of it. We are living, trying to stay positive, but It has been difficult since Elvis' death.” —Miguel
Leslie has seen her life transform in ways she could’ve never imagined. “I’ve learned over the years—a lot of what I do to manage my health works. There’s no way I’m going to stop the progression, but I’ve proven to myself that I can mitigate some of the symptoms through diet, exercise, and attitude.”
“I want this disease to be spoken about in the past tense. That’s what I want for everybody else—for this disease to be a distant memory.”
