Three-year-old Jaxson Bauer can’t yet walk or talk, but that doesn’t mean he can’t get around or express his feelings.
He lounges in a chair in the living room, twirling his hair while clutching his Amazon Fire tablet, letting out the occasional happy squeal as he plays a game and guesses what Elmo is drawing.
In the driveway of the family’s Lewiston home, his mother, Jordan Dudish, buckles him in a wheelchair provided by Rochester-area nonprofit Bella’s Bumbas. Jaxson takes it from there, using his arms to wheel himself down part of the driveway, where he pulls up to watch the cars zoom by, his hands getting excited with each passing vehicle.
In the backyard next, his mom secures Jaxson in his red-and-blue Little Tikes swing. As she pushes him, Jaxson puts his hands up and let’s out that familiar high-pitched squeal of joy, eventually gripping the yellow rope that connects him to the tree branch above.
Jaxson has myotonic dystrophy, a congenital condition in the same family as muscular dystrophy. It is a rare disease that affects roughly one in 2,100 people, or more than 3.6 million people across the world, according to the Myotonic Dystrophy Foundation.
Jaxson has had nine surgeries in the last three years and continues to see various specialists at Oishei Children’s Hospital.
“The last three years have been,” Dudish says, pausing for a couple seconds, “it’s been a lot, but he’s so happy all the time.”
‘My son’s fight’
As she tells her family’s story, Dudish wears a T-shirt that reads, “My son’s fight is my fight.”
She vividly recalls how that fight began.
Dudish had a normal pregnancy in 2019, with nothing out of the ordinary until it was time to deliver Jaxson.
When Jaxson wasn’t moving, doctors performed an emergency C-section. He was born at 5:15 p.m. Nov. 9, 2019, at Millard Fillmore Suburban Hospital, but doctors quickly decided to transport him to Oishei Children’s Hospital after…
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