The Kasner Brothers: A Journey with Duchenne Muscular Dystrophy
Caleb and Duncan Kasner, two young brothers aged 11 and 9 respectively, are navigating life with a rare genetic disorder called Duchenne muscular dystrophy (DMD). This condition, which progressively weakens muscles and has no cure, has drastically altered their lives and the lives of their family. Their journey began nearly six years ago when both boys were diagnosed within weeks of each other, leaving their parents, Dan and Sarah Kasner, heartbroken and unsure of what the future held. Since then, the family has learned to adapt, finding strength in their resilience and the support of loved ones.
A Life-Altering Diagnosis
The Kasner family’s world was turned upside down when Caleb and Duncan were diagnosed with Duchenne muscular dystrophy. Sarah Kasner recalls the moment they received the news, describing how they “crumbled to the floor and cried” as the reality of their sons’ condition sank in. DMD is a progressive disorder that affects every muscle in the body, including the heart and lungs. For Caleb and Duncan, the disease has already taken a significant toll. Caleb stopped walking in December 2023, and Duncan followed in April 2024. Today, both boys are wheelchair-bound and require round-the-clock care.
Adapting to a Changing Reality
As the disease progresses, the Kasners have had to make significant adjustments to their home and daily routines. Recently, their house underwent construction to install an elevator and an accessible bathroom, modifications that have made life easier for the boys. Despite these changes, the family is acutely aware that DMD is incurable and will continue to worsen over time. “Nothing is ever going to get better; it’s only going to keep progressing,” Dan Kasner said. “We just have to figure out ways to stay strong and keep them smiling as long as we can.”
The Medical Challenges Ahead
The progression of DMD has brought additional health complications for Caleb and Duncan. Both boys have developed cardiomyopathy, a condition where scar tissue builds up in the heart, affecting its function. More than 50% of their hearts are now filled with scar tissue, a stark reminder of the severity of their condition. While researchers are making progress in the fight against DMD—a new gene therapy has shown promise in slowing the disease’s progression—it is not an option for the Kasner brothers. This reality underscores the urgent need for continued research and advocacy.
Finding Strength in Community and Hope
Despite the challenges they face, the Kasners are determined to stay positive and fight for a brighter future. They draw strength from their extensive support network, which includes friends, family, and organizations like CureDuchenne, a global nonprofit dedicated to funding research and improving the lives of those affected by DMD. The family also attends annual conventions hosted by CureDuchenne, where they connect with other families facing similar struggles. These gatherings provide comfort, hope, and a sense of community.
Living in the Present
For the Kasners, the unknowns of the future can be overwhelming, but they choose to focus on the present. “It’s so cliché, but it’s about living in the moment with what we have,” Sarah Kasner said. By cherishing every day and finding joy in the small things, the family is able to navigate their difficult journey with grace and resilience. They also share their story publicly through their “Kasners Kick Duchenne” page, using it as a platform to raise awareness and inspire others.
A Commitment to the Fight
Sarah Kasner’s determination to keep fighting for a cure, even in the face of immense adversity, is a testament to her love for her sons and her belief in the possibility of change. “Let’s not stop the fight because I’m not going to stop even when they pass,” she said. “I know this is a curable, fixable disease.” For the Kasners, every day is a reminder of the importance of hope, love, and living fully, even in the face of uncertainty. Their story is one of courage, resilience, and the unbreakable bond of a family navigating a difficult but meaningful journey together.
