MINNEAPOLIS — Leo and Lauren Zabezhinsky’s joy of welcoming their new daughter, Jackie, was soon met with a jarring discovery: baby Jackie wasn’t moving well and couldn’t swallow.
“Sometimes in life we all get dealt a hand that things happen unexpectedly,” Leo Zabezhinsky said. “But it’s not about what happens — it’s about how you respond and how you react.”
Jackie Zabezhinsky would spend two months at the NICU at Children’s Minnesota and then underwent testing and treatment for nearly a year before doctors diagnosed her with myotonic dystrophy, a rare genetic muscle disease.
“We were asking doctors, ‘How long this will last, will she walk, will she be able to go to school?'” Lauren Zabezhinsky said. “Will this be something that will get better or worse with time?”
If it took them so long to learn more about myotonic dystrophy, they wondered how many others families might be left in the dark.
“I think about that all the time,” Lauren Zabezhinsky said. “I want people to learn there’s a diagnosis out there that families deal with every day called myotonic dystrophy, and there are children just like Jackie who attend regular school, who has friends, who has struggles.”