Caleb Kasner and his brother Duncan Kasner move around a little differently than average kids.
The two brothers have Duchenne muscular dystrophy — a rare, inherited muscle-wasting disorder that has no cure.
“Caleb stopped walking in December of ’23, so a little over a year ago. Duncy stopped walking in April of ’24,” their mom, Sarah Kasner, said. “Eventually it just affects all parts of every muscle, heart and lungs included.”
Their journey with Duchenne started nearly six years ago when both boys were diagnosed within weeks of each other.
“We all just kind of crumbled through the floor and cried because we didn’t even know what to expect,” Sarah Kasner said.
The 11- and 9-year-olds are both wheelchair-bound and require 24/7 care.
In the last few months, Dan and Sarah Kasner’s home has undergone construction, adding an elevator and accessible bathroom. The modifications made the make their ever-changing lives easier.
“Understanding that nothing is ever going to get better, it’s only going to keep progressing. Figure out the way to stay strong and keep them smiling as long as we can,” Dan Kasner said.
Sarah Kasner says they have a huge support network that keeps them going amid the highs and lows.
“They both have cardiomyopathy, which is scar tissue in their heart,” Sarah Kasner said. “More than 50% of their heart is filled with that.”
There’s progress in the fight and a new gene therapy shows positive signs of slowing the disease’s progression. Unfortunately, it is not an option for the Kasner boys.
“Let’s not stop the fight because I’m not going to stop even when they pass. I know this is a curable, fixable disease,” Sarah Kasner said.
With a future unknown, the Kasners choose to love and live.
“It’s so cliche but just like living in the present moment with what we have,” Sarah Kasner said.
A huge resource for the Kasners is CureDuchenne, a global nonprofit that works to fund research towards improving and extending the lives of everyone affected by the disorder.
The organization also hosts conventions each year where the family can connect with others families facing the same disease.
The Kasners share a lot of their journey online with their “Kasners Kick Duchenne” page.
