Jett Boseman will never be able to walk, talk, ride a bike, run or do many of the things most children do. In fact, doctors say he will likely only live until he's about six years old.
The 19-month-old has a disease called Pontocerebellar Hypoplasia or PCH, which means two parts of his brain didn't fully develop.
“He's in a 6-week-old to 2-month-old development stage, and we don't expect him to go much further than that,” said his father Cody Boseman, a 30-year-old Creighton University dental student.
In January, the couple started the Jett Powered Foundation, a charity that raises awareness of the disease and raises money for families affected by it.
The charity has two mottos: “You can do hard things” and “Move for those who can't.”
“We know how much these kids go through and we were inspired to share these kids' strength with everybody else,” Boseman said.
The Jett Powered Foundation plans to raise money for the charity by getting people moving in a variety of sports and fitness events. The first event will be a “charitable workout,” mixing strength and cardio for all abilities. The workout is Saturday at 9:15 a.m. at Fit Farm, 4383 Nicholas St., and entry is $20. All proceeds go to the charity.
Boseman said his son was diagnosed with the extremely rare condition in February 2012 at 8 weeks old. He said doctors told him and his wife, Tennille, that there are only about 50 known cases in the country.
The news was devastating for the couple, who are originally from Utah but now reside in Omaha. They are both are very active in sports and fitness but realized quickly they may never get to chase their first and only child around the house or see him play in a t-ball game.
“The first year was really, really hard, but we are finding strength through him,” Cody Boseman said. “I am very humbled by the humanity of people. Everyone says that there are so many bad people in the world, but through Jett, I have found that a lot of people have a heart.”
To sign up for the event, call 402-614-6446 or for more information, click here.
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