Estimated read time: 4-5 minutes
This archived news story is available only for your personal, non-commercial use. Information in the story may be outdated or superseded by additional information. Reading or replaying the story in its archived form does not constitute a republication of the story.
SALT LAKE CITY — Call it a father's intuition: Cody Boseman was certain his son had been misdiagnosed with a genetic disorder, but had no idea what a future diagnosis would mean for his son, his family and countless strangers.
Jett Boseman was born in December with a cleft lip, but showed no signs of having any associated syndromes. After about a month, though, his parents began to notice he was behaving strangely.
"He started doing odd things we didn't think were normal," Cody Boseman said. "We were first time parents, though, so we didn't know. People said it was normal for babies to be shaky or arch their backs, so we didn't think too much about it."
That is, until Jett got sick one day and couldn't breathe. The family rushed him to Primary Children's, where he was diagnosed first with Sandifer syndrome, a rare gastrointestinal and neurological disorder. Cody did not feel right about the diagnosis, and pushed for further testing. After Jett had been in the hospital for about a week, results from an MRI showed that Jett had a small cerebellum. But his parents would have to wait until the next day to find out what it would mean for their first child.
"We didn't eat, didn't sleep, didn't drink," Cody said. "We had such bad anxiety and a gut-wrenching feeling the entire time we were in the hospital and that was the longest night of my life. Google is a powerful tool, but it will kill you if your kid has some sort of disease."
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.
–Cody Boseman
Jett was eventually diagnosed with pontocerebellar hypoplasia, an extremely rare genetic disorder that means Jett will never develop further than where he is at his six months of life, and his life will be a short one, full of surgeries and other challenges.
"Jett will leave us well before we want him to," Cody said. "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."
The Bosemans were planning on moving to Omaha, Neb., and decided to start a blog to chronicle Jett's "flight plan." Their goal was not only to share updates on Jett for friends and family, but to hopefully help people understand what it is like to raise a child with special needs.
"There are different types of special needs people don't see every day," Cody said. "I think it's important for people to understand the lives you lead. People just don't understand what a parent goes through, what a kid goes through."
Cody said that through sharing the family's struggles and triumphs, he has been able to come in contact with many people who have been touched by Jett. Many said they felt inspired to help in any way they could, but did not know how.
Their opportunity came when Cody's brother-in-law, Jeremy Rigby, decided to create a logo for Jett to help the family remember the young boy when he was gone. And Cody's sister, Amy Rigby, decided to surprise the Bosemans by making T-shirts with the logo to sell to family and friends, with proceeds going into a Wells Fargo account to help Jett with medical costs.*
The order soon grew to nearly 100 T-shirts, though, with many people donating more than the $12 that was asked. It was then that Amy had another idea.
"My wife and I love to travel, but will never be able to with jett," Cody said. "She said, ‘Why don't I sell these shirts and people can tour the world with Jett and post the pictures on the blog of places Jett has been?'"
So Jett has traveled. His T-shirt has been photographed around the country, and he has touched the lives of regular visitors to his blog from places as far away as Australia and Singapore.
Cody said the support they've felt through the entire process has been incredible.
"Maybe he can't go out and socialize with people, but he's still interacting, still inspiring people, still making them happy," he said. "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."
And he hopes Jett can continue to touch others' lives as much as the Bosemans have been touched by others' support.
"I just know he's a superhero, and when life gets tough, think of Jett," he continued. "He's this little baby who takes everything and deals with it. when people start complaining about smaller things, think about Jett."
---
*ksl.com has not verified the accuracy of the information provided with respect to the account nor does ksl.com assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account you should consult your own advisors and otherwise proceed at your own risk.
