Caleb Kasner and his brother Duncan Kasner are moving around a little differently than the average child.
Two siblings have Duchenne muscular dystrophy. This is a rare, inherited muscle sucking disorder without treatment.
“Caleb stopped walking in December 2013, so over a year ago. “In the end, it affects every part of the muscle, heart and lungs.”
Their journey with Duchenne began almost six years ago when both boys were diagnosed with each other within weeks.
“We all cried because we all fell over the floor and didn’t even know what to expect,” Sarah Kassner said.
Both 11 and 9 year olds are wheelchair-bound and require 24/7 care.
Over the past few months, Dan and Sarah Kasner’s homes have been built, adding an elevator and an accessible bathroom. This change has made life easier, ever-changing.
“Understanding that nothing will improve is just a matter of continuing to make progress. Stay strong and understand how to smile as much as possible,” Dan Kassner said.
Sarah Kassner says they have a huge support network that keeps them moving at highs and lows.
“They both suffer from cardiomyopathy and are scar tissue in the heart,” Sarah Kasner said. “Over 50% of their hearts are filled with it.”
There are progress in the fight, and new gene therapy shows positive signs that it slows the progression of the disease. Unfortunately, that’s not a Kasner Boys option.
“Don’t stop fighting because they won’t stop even if they pass, I know this is a curable and fixed disease,” Sarah Kassner said.
The future is unknown, and Kasner chooses to love and live.
“It’s a very cliché, but it’s like living in the present moment with what we have,” Sarah Kasner said.
Kasners’ huge resources are Cureduchenne, a global nonprofit organization that works to fund research aimed at improving and expanding the lives of all affected by disabilities.
The organization also holds annual practices that allow families to connect with other families facing the same illness.
Kasners shares many of their travels online on their “Kasners Kick Duchenne” page.
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