Cody Boseman and his wife love to travel, but their six-month-old was recently diagnosed with a rare genetic disorder that will prevent him from growing much further and drastically shortens his expected lifespan. Given baby Jett's condition, they won't be doing much traveling, but the parents came up with an innovative way for the whole family to experience the world while helping others learn about an extremely rare condition.
KSL, based out of Salt Lake City, describes the couple, now residing Omaha, Neb., first finding out something was wrong with their son when he was born in December with a cleft lip. Everything seemed normal for about a month until they, even as new parents, began to feel he was acting strangely. After a misdiagnosis, Jett was eventually diagnosed with pontocerebellar hypoplasia. According to the National Institute of Health, infants with this condition have a small cerebellum and the region of the brain called the pons doesn't develop properly. KSL reports the condition means Jett won't grow past his six-month-old size and he is not expected to live past infancy.
"Jett will leave us well before we want him to," Cody said to KSL. "He will never learn to talk, walk, eat or hold his head up. In my eyes, worst possible thing for a child to have. We decided we just have to love him for as long as we have him, and to make his life as comfortable and happy as we can."
Knowing that even in what is expected to be a short life, the medical costs to help Jett live comfortably will be great. Coleman's brother-in-law Jeremy Rigby developed T-shirts to sell with proceeds going to a bank account for Jett's medical treatments. But the T-shirts with a cartoon in a small airplane and the words "Jett B." are doing much more.
Not only have more than 100 shirts been sold, they are also how Jett is getting to "travel." Coleman's wife suggested people who buy the T-shirts send the family back photos of where they had been wearing them.
One the blog written by Jett's parents, but some parts in Jett's own "voice," he says "I would really like to see the world, but due to my limited time here, as well as the difficulty of me traveling I don't think I will personally see very much. I'm hoping that everyone I know will take me with them 'on their heart' when they travel."
So far the Jett B. T-shirts have been around the country and as far away as Australia and Singapore, according to KSL.
"Maybe he can't go out and socialize with people, but he's still interacting, still inspiring people, still making them happy," Coleman said to KSL. "As a parent, that's probably the coolest thing for us in this situation. It's just nice to know that he's affecting other people's lives."