“Parents Struggle Against Rare Condition for Sons”
Caleb Kasner and his brother Duncan Kasner navigate the world with a unique grace unlike most children. The siblings are both afflicted with Duchenne muscular dystrophy – a rare, hereditary degenerative disorder that currently has no known cure. “Caleb ceased walking in December of ’23, a little over a year ago. Duncy followed suit in April of ’24,” shared their devoted mother, Sarah Kasner. “Eventually, it impacts every muscle, including the heart and lungs.” The Kasner family’s journey with Duchenne began nearly six years ago, when both boys received their diagnoses within weeks of each other. “We all crumbled to the floor, overcome with tears because we weren’t prepared for what lay ahead,” recalled Sarah Kasner.
Aged 11 and 9, both brothers are now reliant on wheelchairs and require round-the-clock care. In recent months, Dan and Sarah Kasner’s residence has undergone significant renovations, including the addition of an elevator and an accessible bathroom, to accommodate the evolving needs of their sons. “Recognizing that their condition will only progress without improvement, we must find ways to remain resilient and keep their spirits high for as long as possible,” stated Dan Kasner. Sarah Kasner emphasized the importance of their vast support system, which helps sustain them through the highs and lows of their challenging journey.
“Both boys have developed cardiomyopathy, characterized by scarring in their hearts which makes up more than 50% of their heart tissue,” Sarah Kasner shared. While there has been progress in the battle against Duchenne, a promising new gene therapy has shown signs of slowing down the disease’s advancement. Regrettably, this treatment is not yet accessible to the Kasner brothers. “We must not relent in our fight because even after they are gone, I will continue to advocate. I firmly believe that this is a curable and treatable illness,” expressed Sarah Kasner.
Amidst an uncertain future, the Kasner family opts for love and life. “Though it sounds cliché, our focus is on living in the present moment with gratitude for what we have,” reflected Sarah Kasner. An invaluable asset for the family has been Cure Duchenne, a global nonprofit organization devoted to supporting research aimed at enhancing and prolonging the lives of those affected by Duchenne muscular dystrophy. The organization also hosts annual gatherings where families can come together and forge connections with others facing similar challenges. The Kasners document much of their journey on their “Kasners Kick Duchenne” platform.
In conclusion, the Kasner family’s unwavering strength and resilience in the face of adversity serve as a beacon of hope and inspiration to many. Their story underscores the power of love, community support, and advocacy in navigating the complexities of a rare and debilitating condition.
